Category Archives: OCD

Aug8

Tuesday Q&A: Michele Carroll

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MicheleHeadShotMeet the lovely Michele Carroll! Some of you may be thinking, “Wait, I think I have met her” because you’ve talked with her or seen her at some of the annual International OCD Foundation (IOCDF) conferences. As you’ll soon hear from Michele herself, she’s had OCD for years—but she’s only recently begun opening up about it more and sharing her experience with people beyond her close friends and family members. Let’s give her a very warm welcome!

How long have you had OCD? Many people—including myself—say it took years and years to be diagnosed, and it can take years to get the proper treatment as well.  What was your experience like?

I began experiencing OCD symptoms at age 10, but it didn’t develop into full-blown OCD until I had my daughter, 19 years later. Currently, I’ve had OCD for 18 years; it took me 13 years to get treatment.

The first symptom of OCD that I recall occurred when I was in fifth grade. At that time, I rewrote my social studies notebook from beginning to end because I thought it wasn’t neat enough and because I feared failing the exam. Looking back, this didn’t make much sense because I was a straight A student, so it would have been very unlikely for me to fail, even if I didn’t rewrite my notebook. In high school, I began to experience taboo intrusive thoughts, although I didn’t know it was OCD at the time. These thoughts started as scrupulous and blasphemous in nature and changed through the years to other taboo topics. No matter the topic, I was terrified of the thoughts because of what they could mean about me. I would engage in compulsions including praying a certain set of prayers in a certain order, doing the sign of the cross correctly to ensure my prayers were “going to God” and not the devil, seeking reassurance from others, questioning the meaning of the thoughts, analyzing them, trying to figure them out, and researching them on the internet. After I engaged in what I later learned were compulsions, my fear would temporarily decrease. The problem is that the cycle would start all over again, resulting in me engaging in the very same compulsions.

Years passed with this struggle. I eventually serendipitously saw a television program that was about postpartum OCD. On the show, the moderator said that doctors were prescribing antidepressants for this problem. Since this sounded a lot like what I was experiencing, I decided to tell my doctor that I was feeling depressed (so that he would prescribe an SSRI). I figured if I said that, I’d get the medicine without having to speak about the scary thoughts I’d been having. I thought I would get better, and the thoughts would go away.

Of course, avoiding talking about the thoughts, trying to suppress them, and engaging in compulsions didn’t make them stop. Eventually, five years ago, when seeing a psychiatrist who was not an OCD specialist, I finally worked up the courage to speak about the thoughts I’d been having. Regretfully, my doctor didn’t seem to understand, and he shared that he didn’t think I had OCD “because you don’t have any compulsions.” By then, I had read about taboo intrusive thoughts and mental compulsions online. I wanted to get help and get better, and I learned about the IOCDF. Through this group, I got connected with an OCD therapist who did exposure and response prevention (ERP). My recovery journey had begun!

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Once you did realize it was OCD, how did you tell your loved ones?

I have told my loved ones about my OCD gradually and on an individual basis. I first told my husband who had been experiencing these issues with me all along. Next, I told two friends who are psychologists because I felt they could “handle” the information. Since I have what has been coined “pure O,” I referred them to the IOCDF website for more information if they had any questions. Some time went by until I then told my mom, also referring her to the website. Telling other people with whom I’m close has happened gradually. But lately, I’ve talked more about OCD on my Facebook page, and now I’m sharing my story on your blog!

You’ve struggled with scrupulosity, or blasphemous intrusive thoughts. What are some of your common obsessions and compulsions?

I have struggled on and off with blasphemous intrusive thoughts, as the intrusive thoughts that I experience seem to hop around like the “Whack-A-Mole” game. When I seem to “conquer” one type of scary thought, the content changes to something else that I find equally scary. But, as the experts say, the content doesn’t matter in OCD; it’s still OCD.

I tend to experience blasphemous intrusive thoughts when I’m about to receive Communion in church. At that time, a scary thought about my love or lack of love for God will pop into my head.  In the past, I would pray a certain way to make the thoughts go away. However, through ERP, I have learned to not respond to the thoughts. I learned to treat the intrusive thoughts like any other random thought I experience, not as more important. Additionally, I will sometimes think to myself, “This is my OCD” or “Good one, OCD. Really clever.”

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A couple years ago you faced what many Catholics with religious obsessions might consider a trigger: visiting the Vatican! Were you nervous about going and experiencing unwanted thoughts in a sacred place? How did it go?

Yes! I was nervous about several different things. In addition to feeling like I’d probably experience intrusive thoughts, I was concerned about the safety of being out of the country with my children and the safety of flying. My brain can create lots of reasons for me to feel anxious! However, even though I was anxious, this was an event I didn’t want to miss. My daughter was going to be singing with her school choir for Pope Francis in the New Year’s Day Mass! This was, what I considered, a once-in-a-lifetime experience.

I coped with this by accepting that I might experience intrusive thoughts while in St. Peter’s. Since this was uncertain, and because my OCD tends to throw things at me that are particularly important to me, I realized that I might experience blasphemous thoughts while there. As it turns out, I’m so grateful I went and didn’t allow my OCD to stop me from going! When we were in an auditorium where Pope Francis was to appear, the Pope literally walked across the aisle and shook my younger daughter’s hand! And I touched him! This was (without a doubt) one of the most exciting moments in my life.

In day-to-day life—you know, not the Vatican—how do you approach your intrusive thoughts without turning to compulsions? And what do you do if you realize you are engaging in compulsions?

Usually, I deal with my intrusive thoughts by telling myself, “That’s my OCD.” If I’m not sure if a thought is OCD or not, I may get stuck for a little while. However, I’ve learned to also consider these as OCD thoughts, to make my best guess, and move on, dealing with any consequences later. I also regularly engage in self-care, including mindfulness, yoga, being active at work and home, seeing a therapist, and taking medication.

You’re a therapist, but you don’t treat OCD. How did you decide to become a therapist? Even if you didn’t know you have OCD before you went into practice, do you think dealing with the obsessions had any impact on your decision?

I’m a clinical psychologist, and although I’ve treated a few clients with OCD, it’s not my specialty. I completed my doctoral degree prior to developing OCD, so I didn’t become a psychologist because I had OCD. When I was in high school, I helped in the guidance counselors’ office during my senior year. At the time, I was experiencing some symptoms of OCD, but it wasn’t diagnosed. One day, while trying to figure out what field to go into, I told one of the guidance counselors I thought I might do what they do for a living. She laughed and told me to become a clinical psychologist. So, that’s what I did!

Since I was already a licensed psychologist by the time I was diagnosed, if anything, this may have made it more difficult to seek help. I experienced a lot of shame and self-stigma because I thought since I was a psychologist, I “should know” how to make this stop and get better. I was afraid at that time that if people found out, it could hurt my career. I feel differently about that now, but every now and then, that old fear will resurface.

I love the idea that therapists understand mental illness, in one form or another, from a personal perspective. But others may say they want their therapists to be “perfect.” Have you faced any stigma being a therapist with a disorder?

I have experienced more self-stigma than stigma directly from others. I have struggled with the thought that I shouldn’t have a disorder, should know how to stop it, and shouldn’t need help. On a few occasions, I have shared with clients or students that I have OCD. My main reasons for doing this have been to help them feel less shame, to let them know they’re not alone, and to encourage them to stick with treatment. Also, I have briefly shared my condition with interns or post-doctoral fellows because, as part of their training to become psychologists, I believe that self-care is vital. I hope to normalize them getting help if they ever need it. In general, when I have shared parts of my story with others, I have felt respected. As a side note, I’ve sought supervision from respected colleagues at times, such as when I’ve felt triggered. I try to be mindful about maintaining a healthy boundary between my personal struggle and the struggles of others.

If you could share just one piece of advice with others with OCD, what would it be?

You are not alone and it’s not your fault. Get treatment so you can live the life you desire. But most of all, be brave.

Jul18

Tuesday Q&A: Erin Venker

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11251846_780769322049276_936520711750468242_nFunny story: Erin Venker lives right here in the Twin Cities and she’s good friends with one of my coworkers, but we didn’t meet until we both attended the 2015 OCD conference in Boston. I knew right away I wanted to connect with her back home, and I ended up asking her to be the vice president of OCD Twin Cities, the local International OCD Foundation affiliate of which I’m president. (Okay, yes, I’ve said this about a hundred times before, but the conference is an incredible way to connect with like-minded people.) Not only does Erin have OCD, she went to graduate school to treat it and is ready to take clients. Call me biased (I’m not, though), but Erin is funny and compassionate and really knows her stuff.

How long have you had OCD? And when did you first realize what you’d been going through might be OCD?

I first had symptoms in 5th grade but I wasn’t officially diagnosed until 7th grade. I was too embarrassed to talk about my intrusive thoughts, so I didn’t realize that was a part of my OCD until years later.

What were your symptoms? 

In the beginning, my OCD was mostly rituals of “breathing in” and “swallowing on” the letter A so I would get A’s in my classes. I also did a lot of magical thinking, for example, having lucky and unlucky colors. It soon evolved to include repetitive praying and confessing to my mom thoughts, worries, and “bad” things I did, or else I believed something bad would happen. I frequently had horrible intrusive thoughts, both sexual and violent. That period of my life is fuzzy; I just remember it was extremely painful. Daily life was exhausting. I thought I was a horrible person and was in constant fear that something bad was going to happen to my family.

What do you think about the phrase “pure O”? Some therapists and people with OCD think it’s misleading because people with pure O do have compulsions—it’s just that they’re usually mental, not physical. Is there any benefit to the label anyway?

I’m still on the fence with this. In college and post-college, my OCD evolved into primarily mental symptoms with rumination, trying to“figure things out” by replaying scenarios over and over in my head, a constant fear of offending people, and reassurance seeking.

Even though I do believe there are compulsions with pure O, I think many people relate more to the term pure O. I’ve talked to several individuals who have obvious obsessional symptoms of OCD, but they do not recognize their compulsive behaviors. They do not believe they have OCD without the compulsive aspect and therefore do not seek treatment. This can be extremely distressing for individuals, especially those with pedophilic, gay, sexual, and violent intrusive thoughts. They feel there is no explanation for what they are going through. They may fear they are actually a “pervert” or want to kill someone, etc. The general population also still sees OCD as an anxiety disorder that just consists of handwashing and being ultra-organized (which I am not…). Hopefully the term pure O will lead to more awareness of the other aspects of OCD.

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Erin’s kitten, Kitty!

Once you knew you had OCD, how did you go about treating it? How long did it take before you began to feel some relief?

I did not receive the proper treatment for OCD until 14 years after I was first diagnosed. Before exposure and response prevention (ERP) therapy, I saw several talk therapists, but found little relief. When I was 28,  I saw Dr. Chris Donahue in Saint Paul. He made exposure scripts during each session, and I would listen to them as much as possible. It was about two months into treatment when I really began to notice a difference in my thought process and feel a huge weight lift.

You’ve used mindfulness to deal with some of your intrusive thoughts. How does it work? Does it work best in conjunction with therapeutic techniques such as cognitive-behavioral therapy and medication?

The first thing I want to do when I have an intrusive thought is to judge the thought and judge myself. Why am I thinking this? This is so perverted. Why is this happening to me? Just stop thinking. I can’t stop thinking about this thought. I cannot stop ruminating about what happened. This leads down a rabbit hole of shame and negative self-talk. I use mindfulness to separate myself from my thoughts. I imagine thoughts as orbs floating and I observe them. I notice my anxiety and accept that it’s there. Sometimes I imagine myself on a diving board looking into a pool. I see my thoughts, and accept that they are there, without diving into the swamp. Imagery and acceptance has been a crucial component of my treatment.

Mindfulness is definitely best used with cognitive-behavorial therapy (CBT) as you begin to recognize the cognitive distortions in your thoughts. Am I catastrophizing this scenario that I have repeating in my head for the past three hours? Is this black and white thinking? Where can I see the gray in this situation?

I have a complicated relationship with medication. I do believe it can be essential in helping people with OCD, but I believe ERP is the silver bullet. Like ERP, it took years before I found a medication combination that worked for me. My hope is that medication will be prescribed more slowly and methodically while encouraging it to be taken in conjunction to therapy. Like with ERP and finding a therapist, do your research on medication and finding a physician’s assistant or psychiatrist who is thorough and understands OCD.

What has been the most difficult part of having OCD? 

It’s exhausting physically, mentally, and emotionally. In the heat of the battle, it feels as if you never get a break.

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You’ve recently graduated with your master’s in counseling—congratulations! You plan on specializing in OCD, using both ERP and dialectical behavior therapy (DBT), which is a more recent mode of treatment for individuals with OCD. Can you explain what it entails?

Thank you! I was very fortunate to work at the Minnesota Center for Psychology in Saint Paul for over two years as a receptionist. They run excellent DBT programs, and I learned a great deal about DBT while working there. DBT has four modules: emotion regulation, interpersonal effectiveness, mindfulness, and distress tolerance.

The primary concept I use in OCD treatment is being in the present moment, noticing your thoughts and feelings without reacting or judging. ERP therapy is all about feeling and accepting your anxiety until the distress naturally decreases without distracting yourself or resorting to a safety behavior.

I encourage clients to “urge surf” when they are tempted to perform a compulsion or ritual. This is a mindfulness technique used in DBT. I tell clients when they have an urge to ritualize, ride out that urge, notice where the anxiety goes, and imagine surfing to the shore as the urge decreases. We want clients to break the cycle of using compulsions and rituals to lower their distress, and instead ride through the discomfort. OCD is also accompanied by general anxiety, so I utilize the self-care aspects of DBT, but not for during exposures.

You’ve also decided not to require that your clients have insurance, and you’re going to charge on a sliding fee scale. Why? 

Due to the rising costs of health care, insurance benefits have increasingly become more complex. Self-pay ensures that the client’s records and diagnoses are entirely confidential documents, as I will not have to submit them to insurance or a third-party payer. The content of sessions stays between myself, the client, and my supervisor, Dr. Vernon Devine, who has more than 46 years experience treating individuals with anxiety disorders.

Due to the nature of exposure therapy, treatment often involves appointments that need to be longer than an hour, multiple sessions a week, at-home sessions, and public exposures. Self-pay allows for treatment freedom as well as the time to get to the root of the problems the client is facing. It makes treatment much more effective. Typically treatment lasts no longer than three months before going to an as-needed appointment basis.

For individuals who are adamant about using insurance, I am happy to refer them to other therapists and give some general guidance for seeking treatment.

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If you could offer just one piece of advice to others with OCD, what would it be?

Be sure you get a therapist who is well versed in ERP. A therapist should help you create a hierarchy to confront your fears and anxiety and not be afraid to challenge you. A therapist does not need to have a PhD or PsyD to be qualified. Several therapists who are MA, LPCC, or LICSW are excellent at treating OCD.

Also, find a support network. If you’re here in the Twin Cities area, join the OCD Twin Cities book club or a support group, and if you’re not, look into support groups and International OCD Foundation (IOCDF) affiliates in your area. I am working on starting an OCD therapy group. Look at the IOCDF website. Read books about OCD and educate yourself. Talking to people who understand and realizing how closely your symptoms relate to others can be a huge step in recovery.

OCD is a misunderstood and extremely painful disorder. However, I have found people with OCD are some of the strongest, most intelligent, and creative individuals. We feel emotions deeply and are highly sensitive. There is a way to harness strength in your OCD and embrace the uncertainty of life.

Jul11

Tuesday Q&A: Abby Heugel

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AbbyHeadWelcome Abby Heugel, one of my favorite people to follow on Twitter! While I do like scrolling through Twitter to find tweets relevant to OCD and general mental health, it’s also really refreshing to just giggle now and then. Abby manages to shed some hilarious light on OCD and anxiety—without making people who have OCD the butt of her jokes. Knowing you’re not the only person who gets anxious every Sunday night can be just as important as knowing you’re not the only person who has upsetting intrusive thoughts.

A few years ago I came across My OCD By the Numbers, a post you wrote for The Huffington Post, and I loved it so I shared it on Twitter, Facebook, and my blog. Not long after I also started to follow a Twitter personality known as Abby Has Issues. Yes, I’m a little slow, but it took me several more months before I realized you were the same person. While your tweets definitely touch on anxiety, they’re mostly lighthearted and funny. Did you make a conscious decision to keep your Twitter presence more upbeat?

I try and keep my Facebook and Twitter updates more along the lines of humor, although I do bring depression and anxiety into them from time to time seeing as that’s a huge part of my life. But I also want an escape, and that’s what Twitter and Facebook are for me. I even feel really self-conscious sharing my more personal blog posts on Facebook, even though they’re often met with people who say that they can relate. That said, I never tweet out links to the one or two “serious” blog posts I’ve written over the past year. For me, it’s just not worth it.

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You’re one of the funniest people I follow on Twitter, which is exactly why I followed you in the first place. As you noted on your blog, your most popular post is The 10 Commandments of Grocery Shopping. Your tweets were listed among the funniest of the year in 2015 and 2016. You’ve been named a Top 25 Humor Blogger. And you manage to make people laugh and poke fun at anxiety without stigmatizing mental illness or being a jerk. Does humor help you face your fears and cope with anxiety? How do you feel about jokes that do perpetuate stigma?

Yes! I feel like it’s a great escape for me, and I try not to obsess about whether or not anyone anyone is actually reading my stuff, but good luck with that. And the stupid OCD jokes really get to me, which is why I try and share my story and experience. You wouldn’t make tasteless jokes about cancer, so why is mental health fair game?

When did you decide to share your experience with OCD? How did you know you were ready, and what was the response like?

After a while I got tired of hiding it, seeing as it pretty much took over my life. I felt like people should know how hard it really is to even function on a day-to-day basis sometimes, and that each day is really a challenge for me in certain ways. It almost felt like I was living a double life—what I projected online and the issues I dealt with in reality. When I shared a couple blog posts about OCD and depression, there was actually a really great response. People sent me messages saying they could relate, they left comments thanking me for being so open, etc. It was a little scary because people in real life could also read it, but at the same time it was kind of a relief.

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As most of us with OCD know, there’s no cure per se. We can learn to manage OCD, anxiety, and depression—and because of that we also fool others into thinking everything is peachy-keen. What do you wish people understood about what it means to have a mental illness and an often typical, productive life?

I think it’s best summed up in this blog post, which I was really, really hesitant to publish simply because OCD, depression, anxiety, eating disorders, etc. are so misunderstood. But that’s also why I wrote it—to hopefully provide a little bit more understanding. 

Whereas normal stresses would be difficult for “average” people, they are compounded ten-fold for people struggling with a mental illness. Even changing the time of plans can send me into a tailspin at times because it interrupts my routine. I’ve been trying to be more flexible and I know it’s not the end of the world, but it’s still a struggle. And when you’re depressed? Lord, some days you just want a high-five for actually washing your hair or making a phone call you’ve been putting off for a week, even though you appear to be a super productive person professionally, for example. People can’t see that just by looking at you. It’s really frustrating.

And speaking of productivity, you’ve done so much! You blog, you’ve written a couple books and contributed essays to others, you tweet regularly. How do you balance it all, and how does having anxiety affect your drive?

Well, I don’t blog that much anymore at all and the books were done more than five years ago, so I really don’t do that much. Ha. But thank you! I recently lost my job, which has thrown me into a really scary place (see above about stresses happening to normal people versus those with OCD/anxiety/depression) so I guess I’ll have more time to tweet! Actually, I’ve been tweeting even less because to be honest, I feel like my medication might be numbing my creativity, which is not good for a writer. I have to choose between being balanced (ish) and less creative or a total mess but full of more creative ideas.

That said, I was extremely obsessive with my last job, much to my own detriment. I felt like I always had to be working (and working out) and couldn’t even relax and watch TV without feeling like I had to be “on” and doing something productive. It wasn’t healthy. So instead of freaking out about this unemployment, which I am trying not to do, I’m trying to frame it as a new chance to do something with a healthier frame of mind. I know I’m damn good at what I do, so now I just have to convince someone else of that so they hire me to work remotely from home again!

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You recently spoke to CNN about your exercise addiction. First, congratulations on the major outlet for spreading awareness! Second, what advice do you have for someone who may be struggling with the same issue?

It’s honestly my biggest struggle, as it’s how I deal with my intense anxiety and the OCD/routine keeps me doing just as much day after day after day to the point of a detriment to my health. It’s not about vanity. It’s about routine and anxiety, which people don’t understand. My advice would be to tell someone, to be accountable, to get professional help. I’ve been going to therapy now for a few months, as I mentioned in the article, and while I’m still in a bad spot exercise-wise, I have accountability and we have small, manageable goals. Secrets keep you sick, and there is so much secrecy and often shame associated with mental illness, which can stop you from getting help.

You have to want to get better and know that if you feel stuck and miserable with how things are right now, you really have nothing to lose by trying to change those maladaptive behaviors. If you’re going to be uncomfortable either way, might as well be in a positive direction!

When did you realize you had OCD? How long had you been experiencing symptoms before you were diagnosed?

Looking back now I see that I had OCD symptoms and behaviors even as a little kid. They were dormant for quite awhile, but they reappeared in college following a couple of traumatic events. They always manifested with food and exercise, which is extra tricky seeing as those are often viewed as “healthy” outlets. But anything taken to extremes is unhealthy. It was during my second (short) inpatient stay that they finally realized it wasn’t an eating disorder, it was OCD that manifested itself in these behaviors. That was a huge relief that people finally “got” it. It wasn’t about vanity. I didn’t think I was fat. I just wanted an escape from myself.

Once you did know it was OCD, what were your next steps?

It literally took another decade for me get help again. This happened about a year and a half ago when my physical health got so bad I had to have blood transfusions because I was anemic. My doctor told me either I found a psychiatrist and get help or she would stop seeing me and I would left on my own. I finally found one that would work with my outpatient, and a therapist willing to see me, and that’s where medication came it. It took some trial and error and a lot of frustration, but right now I’m on some meds that are still minimal in terms of dosage (I loathe drugs) but appear to be effective. There’s nothing wrong with needing medication. I know now that I’ll probably need it for the rest of my life, but as long as it keeps me from hitting the lowest of the lows or the manic highest of the highs, I’m okay with that.

If you could share just one piece of advice with others who have OCD, what would it be?

Just to know that you’re not alone. There are so many misconceptions and stereotypes that reaching out can feel kind of fruitless, but you’re not the only one that feels the same way that you do. You’re not a freak. There are things that can help you to deal with it if you’re open to sharing your struggles. Trust me when I say it will be a relief…and isn’t that what all of us want?

Jul4

Tuesday Q&A: Barbara Claypole White

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Barbara-Claypole-WhiteGreetings! My American readers: Happy Fourth of July! Today’s guest is a Brit living in America, so part of me wants to make a Seinfeld-esque attempt at observational humor, but the other part of me says, “Dotson, you’re no Seinfeld.” Barbara, we’re glad you’re here—both in the United States and in this latest edition of Tuesday Q&A.

Barbara is a successful novelist, which takes dedication and self-discipline; maintains several gardens even though a humongous black snake often makes an appearance; advocates for OCD awareness; and has been a loving but firm source of support for her son with OCD. In short, she’s tough, and I love that. Parents of children with OCD—whether they’re little ones or young adults—read on.

Your young adult son has OCD. How did you realize that he might have OCD? 

Such a great question because it took years to get a diagnosis and treatment. I learned the hard way that parents need to do their research and find a psychologist well versed in exposure and response prevention (ERP) therapy. With the gift of hindsight, I can trace my son’s anxiety back to when he was four, but he didn’t receive the help he needed until he was at least nine. Maybe ten.

He was a happy, well-balanced child who gradually started fussing over every detail: Did that cloud contain a tornado? Was the mold on a tree anthrax? I remember saying to my husband, “I feel as if I have to edit life for him.” I was concerned, but I’d never heard of OCD.

Around his fifth birthday, he developed stomach problems and headaches. His pediatrician worried he might be a celiac or have Crohn’s disease, and after a variety of invasive tests that came up negative, I took him to a holistic doctor. He said, “Watch his body language. Your son’s anxious.” Bingo. That was our first turning point.

Then his sleep patterns went to hell, and we consulted with a well-respected child psychologist. She mentioned OCD in passing and told me I had a great son. I did; I do. But she offered no real explanations for his obsessive behavior, and when I told her I helped him avoid situations that made him fearful, she congratulated me on being a good mother. No, I was being an enabler. Bad, bad mother!

Finally, after a family vacation left us in tatters, she threw up her hands and said, “Medicate!” and I refused. Instead, I did what I do as a writer: I turned to research, which is how I stumbled across the IOCDF website and learned that Dr. March’s clinic was down the road at Duke. (I really, really wish someone in the local medical field had shared that information with me.) I enrolled my son, and his second psychologist—who he still sees—was an instant fit for our family.

We did a year of intense exposure therapy, which I charted like a military campaign, but the progress was slow. When the psychologist suggested meds, I felt we had failed, but she explained drugs could lower the anxiety enough so that we could do more work. And she was right. Three years later my son was off meds and 95 percent OCD-free. Life was peachy…until the stress of college visits.

Since then, we’ve been on and off the OCD roller coaster. However, my son never lets OCD hold him back. A kid who was once terrified of flying opted for a university two plane rides away and recently graduated Phi Beta Kappa from Oberlin College. Not bad, huh? Some days are golden, some feel as if they will never end, but we’ve found acceptance as a family. That doesn’t mean we’ve quit; it means we understand that our son has a chronic illness, which needs managing.

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OCD is undoubtedly difficult for the person who has it, but it’s hard on loved ones as well. How did you work through the diagnosis and treatment as a family?

We learned to laugh hard and often, and I’m ridiculously tough for a 5’ 2” woman (my guys are both empathetic and sensitive. Emotional sponges, the pair of them). I became the family cheerleader and joined a local support group. The support group taught me that (a) I needed to be around other moms in the trenches with OCD, and (b) I was blessed to have a strong marriage. I watched every other marriage in that group fail—with one exception. When another member asked why I thought my family had survived, I replied, “Because I’m a stay-at-home mother with one child.” But later I realized it’s because my husband and I make a good team.

We also reached an agreement, early in our son’s therapy, that was essential to its success. We have very different parenting styles, and mixed signals are not an option when you’re battling OCD. As the primary parent, I took over our son’s treatment 100 percent, and my husband agreed to never countermand how I dealt with the OCD. When our son spiraled, I could focus on nothing other than the techniques his psychologist had taught us, but with the security of knowing my husband had my back if I couldn’t cope. One evening, for example, he was at a work dinner when I called and screamed, “I’m losing it.” He was home within half an hour.

I also learned to not beat myself up when I needed a break. A fried caregiver is a useless caregiver, and you have to pay attention to your own mental health. This probably explains why I have fourteen flowerbeds. (Gardening takes me to my happy place—even when I’m ranting about voles.)

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It’s one thing to have a young child with OCD, but it must be quite another to have an adult child who’s trying to live his own life and is naturally separating from the care and oversight of his parent. How did you handle the transition between having your son at home with you and having him live on his own?

It was extremely difficult and equally tricky in reverse (our son is now transitioning back to life at home). When he was 10, 11, 12, I dragged him through exposure therapy with the knowledge I could manipulate him. Horrible confession, but true. Obviously, that’s not the case with a young adult, and I was thankful for every college semester he completed without mental collapse.

But before he left for college, we secured a safety net. Our son opted to stay with his local mental health team, so we set up a system for phone consults. We also made sure the on-campus clinic had our son’s files and arranged to meet with the director during parent orientation.

Communication as a family is key, so we set up weekly Skype chats that allowed us to hear/see/judge first-hand how he was doing. We also told him, from day one, “Even if it’s two in the morning, call if you need us.” And he often did.

Meanwhile, I kept educating myself about OCD and tried to stay alert for reassurance seeking. And failed. When I realized I’d slipped back into the role of enabler, Jon Hershfield’s When a Family Member Has OCD became my life raft. (Buy that book, y’all. Buy it now!)

I also think having a coach—even long distance—makes a world of difference. Therapy is heartbreaking and painful, but it does work. You can help your grown child navigate exposures if you’re willing to be the horrible person responsible for inflicting pain (by raising his anxiety in an exposure). My son and I did this throughout the month of January—with the support of his psychologist—and it make a world of difference to the last four months of college.

Garden

It must be so difficult to see your child in pain and struggling knowing that reassurance can actually impede the recovery process. What advice can you give other parents on navigating this fine line?

First off, hugs to any parent struggling with this. Dealing with OCD is counterintuitive to the most basic parenting instinct: offer reassurance, right? Wrong. If you need a reminder of why, read Jon’s book. When our son was in a bad place, we set a cap on the number of times he could check each day and then lowered it gradually. But this has to be done with your loved one’s approval. I can only repeat: therapy is hell for everyone. Go slowly.

I always start with the simple phrase: “You’re checking.” Also, I remind him of the obvious: Have you eaten today? Are you getting enough sleep? His anxiety spikes when he’s hunger or tired, which makes perfect sense.

To sum up: offer love and support, not judgment. And try to use gentle reminders that the techniques work—if your loved one uses them.

You’re an A2A Advocate. Tell us more about your efforts to spread awareness of OCD.

My efforts are never enough, but I try to support the IOCDF through random donations and social media, and I do whatever Jeff Bell of A2A asks of me. Fiction, however, is my main vehicle. I visit many book clubs, and those visits tend to become open therapy sessions. For me that’s key: I need to keep talking, keep sharing my story, keep reaching out to others. Living in the world of OCD can be isolating, and the knowledge that you’re not alone can make a world of difference. It did for me. There is no shame, and those of us who have acceptance can help those suffering in silence.

UnfinishedGarden

The Unfinished Garden, your first novel, centers around a character with OCD. What inspired you to write about OCD after having dealt with it in your own life? 

I love James Nealy, my first hero, and I owe him everything. He set me on my path to writing hopeful family drama with a healthy dose of mental illness.

The story that would become The Unfinished Garden stared with a different hero. After my son emerged victorious from the first round of exposure therapy, James marched into my head and refused to leave. That’s the kind of guy my James is: persistent. I was also drawn to the idea of someone who’d kept the OCD at bay until something in his personal life re-triggered it, and he decided to fight back. (Ironically, my son’s OCD was in remission when I wrote the novel, but returned full force while I was launching it.)

Once I realized I couldn’t shake James, I tore the manuscript apart and rewrote it with James as the hero, but the story was still told exclusively from my heroine’s point of view. Then a famous agent told me James would never make it as a romantic hero. “He’s too dark,” she said. My British war mentality kicked in, and I thought, “Fine. I’ve got nothing to lose then, have I?”

I rewrote the manuscript again, giving James his own chapters. I took readers inside his head and let him talk about “the voice.” Once I’d finished, I landed the agent of my dreams, Nalini Akolekar. Nalini is my guardian angel. She gets that my family always come first, and she took The Perfect Son to Lake Union Publishing, where it became a Goodreads Choice Awards Nominee for best fiction 2015. In a category with Harper Lee. Squee!

I never ask my heroes: Are you too dark? Now I ask: Are you dark enough? James led directly to Felix Fitzwilliam of The Perfect Son. (Felix has undiagnosed obsessive-compulsive personality disorder.) And Felix led to Marianne Stokes in Echoes of Family. (Marianne is a successful music industry executive who happens to have bipolar disorder.)

Your next book features a mother with postpartum OCD. How did you decide on this character? Was there anything you learned in your research that surprised you?

Yes! The Promise Between Us, which comes out in January, returns to OCD. And it’s just been listed on Goodreads, so please pop over there and add it to your “want to read” shelf. What’s it about? I’ll let my real-life hero tell you:

If you leave your newborn child because you have unstoppable thoughts of harming her, are you a good mother or a terrible one? This dilemma is at the heart of Barbara Claypole White’s novel, a wrenching story of how one woman’s OCD has a ripple effect on those around her—including the people she tried hardest to protect. This is an eye-opening and realistic exploration of mental illness—a topic that greatly deserves to be front and center. — Jodi Picoult, NYT bestselling author of Small Great Things

I’ve always wanted to write more about OCD, and until I found Katie Mack, I had assumed that meant more James. Katie’s a metal artist who took her first welding class as an exposure. How did I find her? Through a heartbreaking incident in the OCD community.

A member of a private, online support group posted about her struggles with pedophile OCD, someone leaked her comments, and her employer fired her. That story haunted me for weeks, and it led me to postpartum OCD and an interview with the amazing Angie Alexander. The moment Angie referred to harm OCD as “the dirty underwear of the OCD world,” I knew I had found my new heroine.

The research was gut-wrenching, but I was fascinated to learn that postpartum OCD can also affect dads and grandparents. And some of the research taught me new coping techniques. My learning curve with OCD never ends…

If you could give just one piece of advice to someone with OCD, what would it be?

As a teenager, I had two specific OCD fears (although I only figured this out recently). I’m not sure why I never developed full-blown OCD, but I would guess it’s because my life has been one big exposure. Like my son, I chose to go far away for college, and every success I’ve achieved in life has come from moving way, way beyond my comfort zone. I can push myself hard because I’m wired that way, and I’m ridiculously good at positive thinking. However, I would never encourage someone struggling with severe OCD to stay in the boxing ring in the way I would. (Did I mention I’m not good at quitting?) When my son was younger, I often pushed too hard on exposures and had to learn that it’s okay to fail. Now when his OCD is loud, I remind my son that a temporary surrender is a chance to pull back and regroup. It’s not defeat. Even in the OCD world, bad days end and each new day brings hope. Never lose sight of that hope.

Jun27

Tuesday Q&A: Catherine Benfield

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Happy Tuesday! Please welcome Catherine Benfield, OCD warrior and creator of Olivia, a rather adorable cartoon representation of Catherine’s obsessions. Olivia has been making the rounds on social media and regular media, so she may look familiar — but even if she doesn’t, you’re about to learn all about her, and you may even feel inspired to dream up your own “OCD as an annoying but not exactly terrifying” character. I just love Catherine’s outlook on OCD and appreciate her candor, so I’ll let her take over now!

How long have you had OCD, and how did you first realize what you were experiencing might be OCD?

I’ve had OCD for as long as I can remember. As a child, I was terrified of harm coming to my loved ones and compulsions took up a lot of my time. I checked taps, switches, plug sockets, window latches, basically everything and anything. I also had to repeat things until they felt just right and at times it was very difficult for me to lead a normal life.

I saw a few things on the media about OCD during my late teens so realized that that was probably what I had, but in true anxiety style I was too ashamed and frightened to tell anyone.

This theme of OCD — of checking everything — stayed with me to varying degrees until my early 30s, with whole years of being much, much better in between where I managed to hold down a successful teaching career, get married, and begin the extension of my family.

In 2012, I had my son, and about five days after that, my checking OCD returned in force. This was shortly followed by what I now know is postnatal OCD and I became very poorly. I didn’t know what it was at the time, and what ensued was, without doubt, the hardest and most frightening time in my history of living with OCD. I became convinced that I was going to harm my son or worse. My story gets a little heavy here but I want to be totally honest and get this out there so people know that they are not alone, and that it’s important to talk about it. My postnatal OCD caused me to have graphic, detailed images of me hurting or killing my little boy every minute of every day. Obsessions, in general, can be based on thoughts, images, and urges and in this case, I experienced all three. The thing that terrified me the most was the urges. I now know that most new parents get have the odd urge to hurt their children, it’s just what the brain does, it’s all a bit random, but the difference with me was that whilst many people could brush them off as meaningless, my OCD kept replaying them because it wanted me to be certain that I wouldn’t do it. Ultimately, my OCD kept up until it had convinced me I was capable of harming my son. I hit crisis point and went to my doctor to beg him to take me away from my child for his own safety. That didn’t happen obviously and I received medication. I still had no idea that I had postnatal OCD.

I went through a few months of misunderstandings and misdiagnoses before eventually I wondered if what I was experiencing could be related to the checking OCD I had. I keyed it into Google and found a world of stories just like mine and that’s where my recovery began. Accepting that I was the one who found out what was going on with me, and that I initially flew under the radar and didn’t get adequate help for a while, has been part of my recovery process. My medical team were amazing professionals, they just hadn’t been trained in all the ways OCD can present itself. Amazingly, only a few years later, I am seeing so many developments taking place in this field. It’s fantastic to see.

Although not very nice, this time of my life was what got me actually looking for help and treatment; it helped me to accept that I needed to work hard to overcome the condition. Without hitting rock bottom, I’d still be wondering around checking everything all the time. So, the positives aren’t lost on me!

Once you knew it was OCD, what steps did you take? 

Once I realized that I had postnatal OCD I went straight onto medication. I was desperate to stop the thoughts, images, and urges from circling like vultures and they bought me some much-needed relief.

I hadn’t read much about how to recover from postnatal OCD because I was worried it would make it worse or give me creative suggestions for my next obsession — classic OCD talk! So, for a while the only way it got treated was with medication. It became clear that that wasn’t enough when I relapsed straight after coming off them, so I self-referred to CBT therapy.

I spent twenty weeks with the most amazing therapist, and boy did she work me hard! We worked a lot on negative thinking styles, and thought challenging. I also live with generalized anxiety disorder and depression so we had to address some of those issues before I was ready to move onto the exposure and response prevention (ERP) work. I lost my parents shortly after finishing my first lot of therapy and relapsed, so I went back for another twenty sessions where we readdressed some issues and worked on bereavement. I came out of those sessions a new woman.

I made sure I always completed my homework from therapy sessions too. I read everything I could about OCD, self-care, and mindfulness and I started implementing what I’d learned into my life. I did exposure work… I stood, holding my little boy in my arms, by the side of the road, on a bridge, at the top of an escalator, and on a train platform, whilst holding a carving knife, as a way of exposing myself to the fears that consumed me and I gradually started to see a shift in my thinking and sense of well-being.

I told one non-medical person, my husband and absolute rock. I’ve always told him everything. He was worried, as anyone would be, but learned as much as he could about the condition and supported me the whole way through without falter. As for everyone else?  I couldn’t bring myself to tell them. I couldn’t even imagine how that conversation would go. I thought once it “got out” everyone would be concerned about my child’s welfare and I wanted to stop them taking him away from me. Fear was still stopping me make helpful decisions.

A couple of years later I decided to begin telling people. I felt like I was living a lie and wanted to be open about my OCD. I told my close family and friends,  and once I knew I was going to start prepping for, and ultimately launching, Taming Olivia I told everyone. Not one person was anything other than totally supportive. I’ve had so many mind-blowingly open conversations about mental health since then — it really is incredible.

Can you share some of your more common obsessions and compulsions with us? What techniques have you found most helpful in addressing them?

A new one for me is the well-being of my son. As he’s got older, my OCD has shifted from physical harm to emotional, mental, and psychological harm. I often analyze how certain events may affect him. I trawl through memories or weigh up “evidence” trying to find out for certain that nothing has hurt him in this way. I find myself constantly wanting to ask, “And how did that make you feel?” I have to fight the urge to be too overprotective. Again, I use the strategies I mentioned above. More specifically I have to remind myself of “what I know.” I know there is nothing certain in life — I cannot be 100 percent sure that something hasn’t hurt him in this way. I know that OCD tends to focus on the things that are important to you and my son is definitely that. I challenge my thoughts. I stop myself from performing the compulsions; I don’t ask him all the time how he is feeling. I still struggle to find moderation here, so I look to my husband and friends as an example; it’s a bit like carrying out a survey. I use others to help give me an indication.

My other one is the baby gate at bedtime. I find it such a challenging one to conquer that it’s even got a whole blog written about it. It’s become a bit of a celebrity! I check it and check it in the hope it’s shut, and that my little boy won’t fall through it in the night. I again use what I know of OCD to stop me checking it, and it’s my current exposure work so I’m working up to shutting it and going to bed to “sit with the discomfort.”

I’ve found that treating my own OCD as “other” can be very helpful. You’ve taken that concept to a new level, creating “Olivia,” an impish cartoon character who represents your OCD. How  did you come up with this idea?

They say necessity is the mother of invention and that was very much the case for the development of Olivia. Due to the nature of my intrusive thoughts, my self-esteem had taken a nose-dive and I was looking for a strategy that I could use, alongside the strategies I was already using, to really hammer home the fact that the thoughts didn’t indicate something bad about me — that they weren’t “me.” I’d heard a few people say that their therapists had recommended giving their OCD a name; I tried this for a while but I personally found that it didn’t do enough to externalize the condition for me, so the next step was to extend that idea into a character. Most of my intrusive thoughts take place in image form, particularly the very unsettling ones, so it became the case of using images to help defuse images. It wasn’t really a conscious thing at first; I just started imagining Olivia throughout various daily OCD spikes and it really started to help. As I started seeing results, she became less abstract and developed a form and a personality. Olivia is now very much her own “being.” Every time a new OCD-related situation or theme comes along, I find I can adapt her to the situation, and it helps me appreciate the situation in a new light. I now use her to help me externalize all kinds of obsessions, not just image-based ones.

Physically, Olivia is a cross between an alien and a hare with a few extras thrown in. Her ears are important because they provide a very clear indication of when she is startled. I wanted her to be dramatic because it helped me see how over the top and irrational she — the OCD voice — could be. The arms and legs were vital too and they change depending on her mood. There’s a real vulnerability about hares, those big eyes and twitching noses. They’re not as cute as fluffy bunny rabbits but there’s something athletic and graceful about them. I always think it’s easy to see the raw panic they display, and that matched Olivia’s personality perfectly. (I also think it may stem back to when I watched Watership Down as a kid — if you’ve seen that film you’ll know what I’m talking about!) Finally, to round it all off, she’s a little tatty because she’s been through a lot. Actually, before I go on, I must take this opportunity to thank my husband as he is my honorary resident illustrator and responsible for getting Olivia “world-worthy.” He is a professional artist, which has proven very handy for me (not so much for him! 😊).

I undertook some research to see if anyone else was doing the same thing to help them externalize their conditions and couldn’t find much information. What I did find was very heavily based on using fear to help externalize the condition. People were encouraged to imagine their OCD as a bully that constantly tried to manipulate them into certain thoughts and behaviors. Although I can see how that might work, it wasn’t something I was willing to do. There was enough about OCD that I found frightening already; the last thing I wanted to do was to live my life beside a character straight out of a horror film that required the energy to constantly battle it — so I reversed the idea.

As a teacher and mother to a little boy, I found it more natural to imagine her as a child, and in this particular case, a frightened and vulnerable child. I do my best to try to understand that she is constantly focused on worst-case scenarios and that she kicks off big time if she wants my attention. I try very hard to show her empathy, kindness and compassion; it doesn’t always work, but on the whole, it does. I don’t want to struggle against her… I know from experience that that doesn’t work. The aim had always been to try to accept Olivia in my life. Funnily enough, since beginning this acceptance, I find I spend far less time with her than ever before.

I spoke to a few other people about Olivia and got great feedback, so I decided to make it public in the hope it could help others.

What kind of response have you gotten to Olivia? It seems that people love her!

I’ve had some amazing feedback. I’ve received emails from all over the world telling me how much Olivia is helping people externalize their own conditions. They’re not all OCD related; I’ve heard from people with a range of mental health conditions saying that the concept is the only thing that’s worked for them. Some use Olivia; others create their own. I’ve had people share their own creations with me — it’s brilliant! Some of the characters are deliberately designed to look ridiculous to take the power away from them, and there have been a good few laughs over the results. How amazing is it that people can laugh about an externalization of a condition that has at times tortured them?! It’s so healing! I believe a few psychiatrists are starting to use the idea in their practices. Olivia’s story was picked up by the OCD-UK Compulsive Reading magazine and was in a recent edition.

The absolute best feedback I’ve had have been from parents telling me that the Olivia concept is really starting to help their children who have previously been encouraged to create frightening externalizations. One woman even told me she hears her daughter explaining to her character, in a calm and collected way, about why she (her character) was wrong! I burst into tears when I read that letter!

I was so nervous when I first launched Taming Olivia. I worried people might think it belittled the illness or that I was trying to make a joke out of something painful, but I haven’t heard a single criticism. I’m sure not everyone is a fan but they are, at least, kindly keeping it to themselves.

Your blog, Taming Olivia, is helpful and so fun to read. Imagine someone approaches you and says, “I’d love to start a blog about OCD, but I don’t know where to begin. Can you give me some advice?”

I’d say go for it! Don’t rush; take your time to collect your thoughts. I spent about two months carrying a little notebook around with me and every time I had an idea of a potential blog subject or made an observation about OCD, I’d scribble it down in there. This will give you an indication of the direction you want your blog to go in and have the added bonus of giving you loads of material for when you come to start. This is such an exciting time because you can see everything coming together. Of course, if you don’t want to wait — just go for it. You know what works best for you!

My other piece of advice would be to ultimately do it for you. Of course, you want to help others too, but remember people will benefit from reading your posts anyway. The last thing you want is for it to become an added responsibility or pressure.

Blogging is an amazing way to express your feelings; writing things down forces you to take your time and consider things carefully. I’ve found it very cathartic and great at helping with the recovery process. It also keeps my brain busy and gives me a real sense of achievement.

You stay right on top of Taming Olivia, posting regularly. I admit that I get in ruts, where I start to feel anxious and too overwhelmed to actually do anything. Do you ever encounter writer’s block, and if so, how do you push past it?

The website only launched a few months ago and it’s still very much in the honeymoon phase. I am lucky as I am based at home, so I can do bits and bobs when my little one is at Nursery. I know these circumstances will probably change before long so I’ve been doing quite a bit of promotion to get it off the ground. I wanted it to have a solid base that I could build on when I had less time to give it. I think it will be good to take my foot off the gas pedal a bit because I know how beneficial time away from a screen, social media, and reading and writing about OCD can be. It’s all about moderation.

I do get times where I feel totally overwhelmed and anxious and wonder what on earth I’ve started. I try to be really kind to myself when that happens. I have a few back-up blogs written before I even launched the website and the artwork was pretty much planned, so I’ve been able to use those, which has taken the weight off. I also have blogs planned in my notebook so I’m yet to have the feeling of starting something from scratch.

I’m supposed to be writing a blog about visiting your GP/doctor this week, and I’ve been dragging my feet with it. I know it’s not going to be the easiest one to write and I have a few other things going on this week that need my attention, so I think I’ll either write about something a little lighter or leave it until next week or another time. I naturally put a lot of pressure on myself so I have to actively try to remove it and chill out a bit. If it doesn’t get done this week, it doesn’t matter.

And how do you push through everyday slumps and bumps OCD can cause? 

It all depends on the nature of the slump really. Sometimes I go back to my CBT strategies: identifying and challenging negative and OCD-related thoughts; I might read my positivity journal, or try to concentrate on what I’m grateful for. I might also do some exposure work. Imagining Oliva gets me through many difficult moments because she often helps me nip things in the bud before they have a chance to grow into something more uncomfortable.

I find being productive and keeping busy helpful too, along with concentrating on things I enjoy.

I’ve collected a dizzying amount of strategies over the years and I’ve written them all down on paper so when I’m not feeling great, and my OCD is kicking up, I can refer to it to find helpful suggestions. I write these lists to myself when I’m feeling on top of my condition and they help me for when I’m not handling it so well.

If you could share just one piece of advice with others with OCD, what would it be?

My goodness, there are so many things I want to write about here! For me it would have to be to show yourself absolute love, understanding and compassion. Having OCD can really affect your self-esteem and sense of well-being and it is essential that you go easy on yourself. The nature of your obsessions, or even just the fact you have OCD, can make you feel truly awful so be really kind to yourself. Whether it’s just saying “Okay, that exposure didn’t go all that well, I’ll try again tomorrow” or turning down an invitation to something and deciding to rest instead, just go for it. Write a letter to yourself about how strong you are and what you have achieved so far, and when you feel low read it. If you feel bad about yourself get thought challenging, start a positivity journal that lists some of the things you’ve done during the day and all the awesome things that says about you. Treat yourself, living with OCD can be tough, treat yourself to things you enjoy, or to walks, or some exercise. Engage in self-care, do eat well, do get enough sleep. We don’t have to turn into little models of perfection, but there’s a lot we can do to help us fall in love with ourselves and stay in love with ourselves. Those living with OCD are amongst my absolute favorite people: strong, determined, kind, and compassionate. Make sure you know that about yourself too. You are everything!

Jun20

Tuesday Q&A: Chelsea Elker

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Chelsea with her two oldest children, Brayden and Easton.

Help me welcome today’s guest, Chelsea Elker! Chelsea’s a fellow Minnesotan, which I just learned a month or so ago — I’d shared this achingly beautiful post she’d written for The Mighty without realizing we both live in the Twin Cities area, and then she found me after I wrote a little somethin’ for The Mighty and mentioned Minneapolis. Lucky for those of us in the Twin Cities, we have a budding advocate right here — and lucky for all of you, you can check out her blog about postpartum OCD and get in touch with her via email.

You’ve been open with your struggles with postpartum OCD. When did you first notice the symptoms, and how long did it take for you to realize it was OCD? 

When I was lying in bed one night nursing my three-week-old son (Easton), I thought “what if I smothered him?”…and when I say I had this thought, I mean I could feel it. It felt like I was having an urge to do it, which terrified the life out of me. Once I had that thought, I turned onto my stomach and laid on my hands, I just remember thinking “don’t move, don’t move, don’t touch him.”

I now know that the feeling of the “urge” was my body having a physical reaction against the thought. I now recognize that my anxiety was very high prior to that thought and my overwhelming need to protect Easton caused my body to have a physical reaction against any perceived harm against him. I didn’t know that then, so I spent the next month obsessing about why I would ever think such a thing. Not only was I worried about that thought, but I started having other harm thoughts (all centered on my newborn). I couldn’t forgive myself for the thoughts, I couldn’t let go of the feeling of the urge, and I couldn’t trust myself around him because I felt like I was a threat to him.

Before I reached out to anyone for help, I began researching “scary thought baby” or “weird thought newborn” online to see if anyone else had ever had a weird experience like me. I did end up finding some information about what I was going through and by the time I emailed the therapist that I ended up seeing, I was pretty sure of my diagnosis.

I wish I could say that figuring out my diagnosis made it easier to overcome, but even with the knowledge of what I was dealing with, I still needed therapy and medication to overcome it.

Once you made the connection between what you were going through and OCD, how did you go about treating it? Did a therapist or other doctor make a diagnosis and recommend a treatment plan?

I actually found my therapist by Googling “OCD Specialist MN.” By doing that I found a therapist in my area who not only specialized in postpartum women/OCD, but she had also experienced it herself. I felt like if anyone could understand me it would be her. I began going to her and didn’t take any medication at first (I felt very against medications for some reason) and tried to get through it with therapy alone. There were a couple of times where I tried to reach out to my OB and pediatrician, but each time I got scared off because when I would mention having anxiety they would say “well, not about the baby, right?” I would say no and leave feeling worse.

Eventually I was fortunate enough to enter The Mother Baby Program which was an outpatient program for new mothers in Minnesota (1 of only 4 in the country), there I was able to take part in group and individual therapy and also get stabilized on medications thanks to their psychiatrists on staff. The outpatient program was a huge turning point for me. When I began my journey through OCD, I felt very alone. I slowly reached out to certain people, but only when I would get to the point where I felt like I would die if I didn’t. I felt such a stigma around getting on medication or joining an outpatient program that it hindered me from reaching out sooner.

Can you share some of your obsessions and compulsions with us? 

My obsessions all revolved around hurting my children, on purpose. Yes, I said it. I thought I was going to hurt my kids and I was scared to death.

I thought I would smother my baby, so I never had any blankets or towels near us when I was with him.

I thought I would snap his neck, so I was petrified of holding him.

I thought I would molest my older son so I never let him sleep in my bed.

I thought I might touch my kids inappropriately while changing their diapers or while strapping them into car seats, so I always did those things very quickly, almost paralyzed with fear.

The list of these obsessions goes on and on, I could turn almost any thought into an intrusive thought and almost any object into a “weapon.” Most of my compulsions were mental, so when I was at my worst, I was having these thoughts all day (and night). I always felt the need to disagree with the thoughts, for example:

“What if I smothered him?”

“You wouldn’t do that.”

“But what if I did?”

“You wouldn’t, it’s wrong.”

“But what if I didn’t think it was wrong anymore?”

“You wouldn’t.”

This line of thought was endless, obsessive.

What advice can you share with new mothers who are experiencing similar intrusive thoughts?

If something feels wrong or off, please get help. I’m not saying that from a place of fear for your child’s safety, I’m saying it from a place of love and compassion for your mental well-being. If you are having thoughts that scare you or feel weird to you that means you know the difference between right and wrong. Thoughts caused by anxiety are not dangerous, they may feel dangerous, but they come from a place of fear and a mother experiencing them will go to great lengths to keep her children safe. My biggest fear was that I was losing my mind, I felt crazy. I was convinced that the fact that I was having these thoughts meant that I was dangerous and meant that I wanted to hurt my kids, and that was the furthest thing from the truth.

What I learned in therapy is that anxiety/OCD take what you care about most and put them in the worst case scenario. So the face that I was obsessing about my children made complete sense, they are my entire world. It was my job to keep them safe, so the minute that I felt their safety was in danger, at the hands of me no less, I began to drive myself crazy.

I needed therapy to get better. I needed medication to calm down. I needed both of these things, but I never once had anyone question my sanity or threaten to take my kids away. Reaching out for help and taking that first step was terrifying, but I had to do it to get better. I deserved to get better and be happy again.

I don’t have children myself, but this piece you wrote about your own postpartum OCD spoke to me. Every single line was spot-on and perfectly captured the terror a person with harm OCD can feel. How did you get to the point where you felt comfortable sharing your personal experience?

Brayden, Easton, and Ella.

As soon as I realized what was happening to me, I promised myself I would one day help others. It took me almost a year and a half to fully recover, but I did it and I’m making good on my promise to myself to spread awareness. While I was still struggling, I began a blog called Delicate Change, I wrote on and off for about six months, then I kind of didn’t touch it for two years. During those two years I completely healed and had another baby. Though I wasn’t actively updating my blog, people were still finding me online and messaging me either asking for advice or wondering what had happened to me. When my daughter was about six months old, I felt like I should pick my blog back up again, so I did. I’m still working on perfecting it and updating it as much as I’d like, but it’s important for me to show how my life has gone on since experiencing postpartum OCD.

In that essay, you say, “You obsess over having ‘the thoughts.’ You obsess over not having ‘the thoughts.’ You cry when the thoughts upset you. You cry more when they don’t.” In those four lines you nailed the dreaded OCD loop, the damned if you do, damned if you don’t anxiety we so often feel. How did you learn to cope with the fear that if you weren’t bothered by the thoughts you must somehow like them and want them?

Forcing myself to stop disagreeing with the thoughts felt like jumping off a cliff without a harness. It felt dangerous. I literally felt like I was part of a life or death test, unsure of how it would end up. At the end of the day though, I had to do it. You cannot outthink or reason with OCD. I had to release myself from its grasp. The only way to save myself and my sanity was to “risk” letting the thoughts go.

At first it was very hard. It was a very long process. I was annoyed that even though I knew that I had OCD, it didn’t make my journey easier. Being diagnosed didn’t magically make it go away. Knowing others went through the same thing was slightly comforting, but I had to work through the illness day by day on my own. It was the single most excruciating thing I have ever done, I wouldn’t wish those months of anguish on my worst enemy. Today though, I’m here to say that recovery is possible. At my worst I was depressed and felt like OCD would somehow kill me, I now have all of the joy back in my life and am able to be “present” with my children in a way that I wasn’t before.

You stay home with three darling little kids. How are you doing now?

Life is amazing. I promise that of all the people in all of the world, I was the last person who would have believed complete recovery was possible…but it is. I still think weird stuff sometimes, but I’m able to let it go. The obsessiveness over weird thoughts is gone. I had another baby and I’m smitten with her. I’m so in love. Seeing her and her brothers interact is magical and I’m forever grateful that I’m their mommy.

Obviously, every day isn’t cupcakes and roses, but I’m able to handle my anxiety and stress without having intrusive thoughts. I would also like to add that a huge turning point in my recovery came when I noticed myself being able to complain about my children again. I know this sounds weird, but for a solid year and a half, I would never have said parenting was hard or my kids were driving me nuts. Wouldn’t have said it. That is because, at that time, if I said it was hard, I felt like that meant I didn’t want them or that I wished they weren’t here. I couldn’t admit that parenting got overwhelming without assuming it meant I wanted to hurt them or be rid of them. I can now. I can tell my kids that they’re driving me nuts. I can tell my husband I need a break from them. I’m able to make peace with the fact that they can annoy the crap out of me and I love them more than life itself.

If you could share just one piece of advice with someone with OCD, what would it be?

Please remember that intrusive thoughts are not your thoughts. They are thoughts that come from a place of anxiety and fear. Do not look for a deeper meaning in them or punish yourself for thinking them. People with anxiety/OCD have the exact same thoughts as people without it, the difference is that they cannot let those thoughts go. People with OCD are very sensitive to right and wrong, which makes it hard for them to let go of thoughts that they perceive to be “bad” or “dangerous.” Postpartum OCD is (usually) centered around the baby. Mothers feel such an overwhelming need to protect their children that they will drive themselves completely crazy before ever letting an ounce of harm come to their children. If you are having trouble in any way or just feel “off” please reach out and talk to someone. I know women always want to look like they “have it together” but I’m here to say that it is so very important to take great care of yourself, because it is the only way you can take care of the beautiful babies that you care so much about.

Jun13

Tuesday Q&A: Corey Hirsch

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We’re approaching one of my favorite times of year — the annual International OCD Conference! My guest today, former NHL goalie Corey Hirsch, will be there, not only speaking on a panel about his own experiences with OCD but being presented with the Illumination Award. (Remember the year it went to Maria Bamford and how I definitely didn’t make a fool of myself in front of her? Me neither.) Corey exploded onto the OCD advocacy scene earlier this year when The Players’ Tribune published his essay “Dark, Dark, Dark, Dark, Dark, Dark, Dark, Dark.” It’s beautiful! I kept thinking, “Yes! Me too.” That’s what advocacy can do, let others know they’re not alone and there’s hope. Welcome to our sometimes weird little tribe, Corey.

The International OCD Foundation just announced that you’re this year’s recipient of the Illumination Award, which you’ll accept next month at the conference in San Francisco. What was your reaction when you found out?

I actually started to cry when I found out about the award. To think back to the days where I couldn’t get out of my bed, to getting an award for helping others, it’s so emotionally overwhelming.  I’m thankful and blessed to have had a platform to tell my story, as most do not. I am no different than anyone else fighting the stigma. There are many wonderful advocates and people working in the trenches saving lives. Humbled, appreciative, thankful, there aren’t enough words in the dictionary to describe it.

When I type “Corey Hirsch” into Google, one of the first autofills is “Psycho mask.” Tell us why you chose that helmet.

The Psycho house mask is in the Hockey Hall of Fame in Toronto now. Initially the painter and I collaborated on the Vancouver Canucks colors of the team. They were black, gold and some red, which reminded me of Halloween colors. So the idea was going to be a Halloween theme. Something scary. I can’t remember who suggested it, he or I, but the psycho house came from the Alfred Hitchcock movie Psycho. It was so fitting for how I was feeling inside my own brain that it couldn’t have been a more perfect suggestion.  When I got it out of the box it was almost too perfect. The fire painted in the front was like when you have OCD with the frontal lobe being on fire; eerily, it was almost like the painter knew.  The Psycho house was exactly how I felt in my brain, and that I could hide under it when I had it on.

“Dark, Dark, Dark, Dark, Dark, Dark, Dark, Dark” opens with a scene of you contemplating suicide. What can you tell someone who feels as alone and confused as you did at that time?

First off we need to let society know that talking about suicide does not create suicide. Talk about it and keep talking. Secondly we need to help a person understand that suicide is a permanent solution to a temporary problem and I am proof the problem is temporary. There is help. How it’s so important to reach out if you are feeling that way because when a person is in the middle of it, you can’t see anything else, you can’t see a future, and you need someone else’s eyes and knowledge to help you to find it. In simplest terms it’s like being lost in a forest, and you need a guide to help you out of the forest.

Speaking of that piece — God, I loved it. It was heartbreaking, intimate, and so unbelievably relatable. How did you decide you were ready to share your story in a public forum?

I always knew I wanted to share my story, and I finally felt safe to do so after having a long talk with Clint Malarchuk. He helped me immensely. I also met another person who had the same OCD as I did. His own mother had to resuscitate him after he overdosed. It was heartbreaking. I am very fortunate to not have substance abuse issues, and I didn’t realize there are others out there who are self-medicating almost killing themselves, feeling hopeless. It was time; I am in a good place in my life and I need to let people know they can get there as well. That hope is real.

My obsessions are so personal, I’ve found that telling even one person about them can be difficult. Who was the first person you told, and how did you go about it?

I think my mother was the person I told early on looking for answers, but she had no idea what it was either, or how to help. So eventually I went into hiding and survival mode. The obsessions are still personal and hard for me to talk about, I don’t get into the content of mine, but I do let people know the three categories of Pure O and that I’ve had all of them. I want to educate people on Pure O and I don’t want to miss anyone. So as hard as it is, I feel I have to talk about it.

OCD is hard for anyone, but I’ve never felt that I have to appear stronger than I am, that I shouldn’t show my emotions, that I shouldn’t cry. It must be different for men, particularly professional athletes. Did you feel pressure to remain silent about what you were going through? Have you gotten any flack for sharing your story now?

The locker room is a tough place to have OCD or any mental health issue. Not that guys don’t understand, but there are always 10 guys lined up to take your job. It’s ultra competitive. It’s also why guys hide physical injuries. Societally it’s so much better now, but men have historically been told not to show their emotions. Society over time has taught us that if you cry or show emotions you lose your man card. Thankfully we are in a better place. My story has been extremely well received. If you could see the love and outpouring of support I have gotten, you would never be afraid of sharing your personal mental health story. Society knows it’s a real problem; we all know someone that has been touched by a mental health problem.

What can friends, family, and society in general do to support individuals with mental illness? 

Friends, family and society can help by listening, not judging, and helping encourage the person to see a trained professional. Telling someone how great their life is and they shouldn’t feel that way would only put them in a deeper hole. They already feel terrible enough. If they won’t get help, then it’s important for the healthy person to tell someone they trust or call a help line themselves to get some knowledge on how to handle it.

If you could share just one piece of advice with someone with OCD, what would it be?

That their brain is lying to them. I always thought why would my own brain lie to me? but it does out of fear. That if a person reaches out, gets help and does the therapy, you too can have an amazing successful life. That you will get better, and you are not weak. Some of the strongest, most amazing people I have met are in OCD recovery. I am not going away, and you are never alone.

Mar28

Tuesday Q&A: Kimberley Quinlan

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KymQuinlanWelcome to Tuesday Q&A! Today I’m hosting the lovely Kimberley Quinlan, who always makes me feel better whenever she shares a post from her site or comments on anything I post about OCD. She’s wise and thoughtful, and I find her Australian accent very calming (but that’s kind of a side note — her content is what matters most!). See for yourself how wonderful she is.

Although you treat more than just OCD, I know you through the OCD community. How did you decide to focus mostly on anxiety disorders, body-focused repetitive disorders, and eating disorders? From my untrained perspective, they seem to share some similarities, such as compulsive behavior.

While I don’t have OCD, I did have anxiety as a child and adolescent and I had significant anxiety and disordered eating issues in my early adulthood. When I started treating OCD, OCD spectrum disorders and body-focused repetitive behaviors (BFRBs) during my internship, I immediately knew “these are my people.” Being with my clients with OCD brings me so much joy. I get to sit with my clients and we can be perfectly imperfect together. We can cry. We can laugh. We can be vulnerable. We can be strong.

What resonates most for me is my clients’ stories about feeling like you “have” to do a compulsive behavior, despite a deep, inner knowing that it was irrational. This experience is so similar to those who have an eating disorder. Both disorders include an obsession that causes significant anxiety and distress, and both include an array of compulsions that are done to prevent the feared obsession from occurring.

I love the posts you publish on your site, particularly your soothing podcasts. Where did you get the idea to share audio posts as well as blog posts? 

I am a native Australian who moved to the USA in 2001, right after September 11. A few years ago, a friend from Australia emailed me stating that she was struggling with severe anxiety and asked if I could help her. I gave her a list of great books on her specific anxiety and some information about mindfulness, but for days after we connected I wished I could be more helpful.

There are lots of great mindfulness resources out there, but so few are specific to anxiety disorders, BFRBs and eating disorders. I quickly decided I would do a podcast for those who have these specific disorders and have little access to resources. I went out and bought a decent microphone, set it up in my kitchen and I just started talking. It is kind of funny now that I think about it. I think I did my first episode in my PJs while my newborn son was napping.

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Your practice is in the Los Angeles area, and of course it’s not the only clinic for individuals with OCD to choose from. What advice do you have for people who don’t live in an urban area or within a comfortable driving distance of a provider? How about for those whose insurance doesn’t cover proper treatment for OCD?

There are some wonderful books and online resources (Yahoo forums, e-books, online classes, etc.) out there for those who cannot access face-to-face treatment. The International OCD Foundation (IOCDF) is a great resource for anyone wanting to get down to business and work on their OCD. If you are doing a Google search for resources in your general area, just make sure it focuses on cognitive behavioral therapy (CBT), exposure and response prevention (ERP) and mindfulness.

There are some great options for teletherapy (online therapy) with trained therapists from your home computer or electronic device, if that is financially possible for you. Check the IOCDF website for therapists who are trained to help you and offer this option in their practice. There are some laws that prohibit out-of-state teletherapy, so check with the health care provider first.

Finding a good CBT therapist who uses ERP and who takes insurance can be very difficult.  If you cannot find a therapist trained in CBT and ERP, please do not give up. My best advice is to find an in-network therapist who you feel comfortable with and direct them to the IOCDF for resources to help them to understand how to help you. Also, as mentioned above, there are some great books and workbooks for OCD using CBT and mindfulness.  Bring the workbooks to therapy and go through them together. Having the support of a therapist (or even a friend or family member) can be super helpful and can help you to identify issues that you aren’t aware of.

What would you tell a client who doesn’t think ERP would work because she doesn’t have compulsions such as repetitive hand washing? 

Overt compulsions (behaviors you can see) are not the only kind of compulsions. This is a big misconception. Hollywood has done a great job at portraying OCD as a disorder where one might perform a lot of hand washing or crack jumping, but it rarely shows the other compulsions that come with OCD. Compulsions also include reassurance seeking, avoidance compulsions and mental compulsions. You can do ERP with any of these compulsions. If you tend do to a lot of reassurance seeking, you could challenge yourself to not ask for reassurance and sit with the uncertainty that something bad will happen. If you tend to do mental compulsions, you could write an imaginal exposure about your obsession coming true and read it many times per day, while allowing the physical discomfort of anxiety. If you tend to do avoidance compulsions, you can work to gradually touch or be around your feared object or thought. I have learned that there is always a way to do ERP, and ERP is essential to your treatment. You just have to get creative!

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Imagine a parent friend of yours says, “My cousin told me she’s worried she might be a pedophile because she has intrusive thoughts about children. Should I forbid her from being around my kids?”

Oh my stars, no! I cannot tell you how many strange and inappropriate thoughts I have had about my children or my family members’ children. If we are honest with ourselves, I think we all have had them, in some shape or form. The hard part is those with OCD tend to give these thoughts way too much value.

My 5-year-old daughter who doesn’t have OCD told me the other day that she had a “scary nightmare about hurting a kid, but it was while we were in the car coming home from school.” She decided to call these thoughts “day-mares” and she thought that was pretty funny. We give those “day-mares” as much value as we give the nightmares we have during our sleep. I love this idea and I talk with my clients about this too.

Unfortunately, our society is widely uneducated on OCD and how to respond to it.  Stopping the cousin from being around kids will only enforce a faulty belief that her thoughts are valuable and, resultantly, make her OCD worse. In this case, I would tell the cousin to allow the thoughts to be there while she is around the kids. Even better would be to practice having the intrusive thoughts as much as she can. In my office, we play a game called “One-up.” During this game, we take turns coming up with the most scariest thoughts. The goal is to “one-up” each other by making the thought just a little bit more bizarre and frightening than the last one. It’s a great way to practice having scary thoughts without giving too much value to them. I always joke with my clients that my office walls have heard it all.

Do you have any advice for a young person who hasn’t yet told his family or friends that he has OCD? Are there good first steps he can take in “coming out” with OCD?

I love Brene Brown’s idea of trusting those who have filled up his or her “marble jar.” She talks about how her daughter’s elementary teacher uses a glass jar and puts in a marble if the kids are behaving well. If they aren’t behaving well, the teacher takes a marble out.  When the jar is full, the teacher has a party for all the kids. Brene Brown uses this metaphor as a way of determining if we can trust someone. If a friend has shown through many incidences that they can be trusted, their metaphorical jar is full of marbles. Those are the people who I would confide in. If that person has been consistent in showing they can be trusted, and you believe their jar has been full for a while, take a leap of faith and try sharing with them.

That being said, I would be prepared for lots of questions. Try not to take their questions as judgment. The person you shared with might not understand entirely. Try to educate them as much as you can, or refer them to some of the great books or websites out there.

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If you could share just one piece of advice with individuals with OCD, what would it be?

In my opinion, overcoming OCD takes two things: Deep desire and hard work. I have seen so many people get better. They come in to my office having spent years struggling and battling OCD. The ones who conquer OCD are the ones who have a deep desire and they go to work. It’s really very inspiring.

When I started working on my own anxiety in my early 20s, I didn’t have a therapist. I would read every book I could find and write extensive notes. I would take long walks while listening to helpful podcasts about the issues I was dealing with. There are lots of people out there who can lead you in the right direction. Remember, deep desire and hard work is all it takes.

Mar22

OCD Hope Drive: Jeff Bell & Liz McIngvale

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Have you wanted to dip your toe into advocacy but aren’t sure JeffBellhow? Jeff Bell, founder of The A2A Alliance and founding partner of Project Hope Exchange, and Liz McIngvale, founder of Peace of Mind Foundation, have an idea for you: Leave a 30-second message of hope for others with OCD. Let’s learn more, beginning with Jeff.

Explain Project Hope Exchange.

Project Hope Exchange is a joint initiative of The A2A Alliance and the nonprofit Life Vest Inside. The goal of Project Hope Exchange is to showcase the power of giving hope, and specifically the notion that we get hope by giving hope. What we have built through Project Hope Exchange is an online platform, coupled with what we call our Hopeline, that allows people to leave 30-second messages of encouragement to others battling an adversity that they themselves are either dealing with currently or have dealt with in the past. So, cancer survivors speaking to other cancer survivors, individuals with OCD speaking to others with OCD, or even more broadly, impacted by OCD.

What we have found is that far too often in life, the missing ingredient in recovery is hope. I know this from my own journey through mental health recovery: At my worst I felt hopeless and desperately needed to find that sense of hope to motivate me to get better. What I learned along the way, sort of by stumbling across this principle, is that we help ourselves by helping others. When I found ways to give hope to other people, I found a great deal of hope in that process. So Project Hope Exchange aims to facilitate that. We collect 30-second audio messages — people can leave them through our Hopeline, or they can visit our website, projecthopeexchange.com — we listen to those messages, we vet them, we edit them to 30 seconds if necessary, and we post them by adversity. Our Project Hope Exchange website allows visitors to drill down by adversity and listen to messages from others dealing with that particular adversity and ideally be inspired to leave their own.

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This month in particular you’re focusing on OCD with the OCD Hope Drive. Can you tell us a little more about that?

We’re excited to be partnering with Liz McIngvale and the great folks at Peace of Mind to pilot the OCD Hope Drive with the goal of collecting 100 messages of hope from individuals impacted by OCD, in 30 days. One of the things that really excites us about this is providing a pathway to advocacy for people who are in the OCD community. So often people will think of us and say, “I’d like to do something in the OCD advocacy world, what do you suggest?” We think that Project Hope Exchange is a great place for people to taste advocacy. They can do it anonymously; they can do it with just their first name, but we hope that it affords them an opportunity to feel what it’s like to share some encouragement through this hope drive. We’d like for it to be a gateway to advocacy through our OCD ally organizations, Peace of Mind, the International OCD Foundation, or Riley’s Wish.

What would you tell someone who says, “I’m not 100 percent recovered, so I don’t feel like I’m equipped to share a message of hope with someone.”

One of the great fallacies about advocacy is that we can only provide hope when we have reached some certain threshold of recovery. I find that when people are looking for hope, what resonates most are people who are in the trenches with them, someone who can provide the perspective of someone who’s still struggling, still trying to find all the answers but is making some progress and is willing to share the hope afforded by that progress. I really think it’s important that we share our successes as we go and inspire people along the way.

And if they leave a message of hope and they see you at the OCD Conference in San Francisco, now they have a talking point to meet you.

I would love, love, love to meet everybody who leaves a message. I would love for them to share with me personally what that experience was like for them and for those who are interested in exploring other ways to get involved in OCD advocacy, I would love to talk with them about that and help do what I can to facilitate that.

Liz McIngvale

And now let’s hear from Liz! Why did you and the Peace of Mind Foundation get involved with the OCD Hope Drive?

I’ve always worked really closely with Jeff, and I’ve loved our partnership and our ability to work together to make a difference for individuals with OCD. Jeff and I spent a lot of time thinking about different ways and opportunities for us to collaborate to make an overall impact in the OCD community. And this just felt like a really great way to be able to do that. It was simple — people could it from their own home and from really anywhere that they were — and it gave other people a chance to give individuals who are really suffering a lot of hope. That’s something that’s really dear to my heart.

What would you say to someone who asks, “How can my 30-second message of hope make a difference?”

It doesn’t matter how long or short the message is. Being willing to just talk to someone, support someone, be empathetic toward someone with a mental illness gives us hope, so being able to give them a message of hope, whether it’s short and quick or long is irrelevant. At the end of the day, you’re taking the time out of your day to remind us that you believe in us, that there’s hope available for us, and that we can and will have a happy life despite this disorder.

Can you speak a little bit about what messages of hope have done for you and your recovery?

For me, it’s knowing that other people have a diagnosis like I do. That in and of itself is super moving and inspiring. But I think more than anything it’s just the fact that there are people out there who care about me. It doesn’t matter who you are, whether we’re related or I know you: Leaving a message of hope to tell me that it will get better, that you’ve gotten better, or that you’re thinking about me — all of those things inspire me to move forward.

And here’s a question for both Liz and Jeff: Since so many people who will leave a message of hope this month have OCD, an anxiety disorder, they may feel really nervous about doing it, even if it’s anonymous. Do you have any tips for someone who might be feeling like “This needs to be perfect or I shouldn’t do it at all?”

Liz: The biggest thing to remember is that there’s no right or wrong, there’s no black and white. It’s just about giving hope, and you can’t do that in a way that’s not a good way. No matter what you say, it’s going to be meaningful, it’s going to be moving, it’s going to be impactful, because you’re taking time out of your day to share some words that will lift someone else up. Don’t worry about it being perfect, because imperfection isn’t the point. If you have done the act of recording a message, you will inspire and move somebody.

Jeff: It can be challenging on many levels to share a story, even in 30 seconds. Let me start with one of the most challenging components of that, and that’s that “I’m not worthy of providing hope.” We touched on that already in terms of the idea that one needs to be fully recovered before I can share hope. The mere fact that you are willing to put yourself out there, even anonymously, and make an attempt to help other people, that is such a courageous thing to do that that courage alone will inspire people. I want potential participants in the hope drive to know that just stepping out and leaving that message is hugely courageous and will be perceived as such by other people who listen to that message. The second thing is those of us with OCD like to make the world very black and white, either I’m gonna leave the perfect message or it’s gonna be really, really bad. There’s no such thing as a perfect message. The message we want from you, an OCD sufferer, someone impacted by OCD, is simply a heartfelt acknowledgment that this is  difficult but that it’s possible to move forward with recovery and support of others who are dealing with OCD. The third thing from a very practical aspect is that we try to make the interface as user-friendly as possible, so you can do as many different takes as you’d like with your message. You can call, you can listen back to your message, if you don’t like it you can push a button and re-record it and then re-re-record it and re-re-record it, and we only get that message that you decide you’re ready to send to us.

A couple of closing thoughts: If someone is feeling apprehensive about worthiness or ability to leave a message I would encourage them to leave that first message anonymously, give us a couple initials, whatever is comfortable for you, but give yourself a chance to see what it’s like. Push your comfort zone and leave a message anonymously if that’s easier for you, but give yourself the opportunity to see what’s possible when you step into advocacy. Listen to other people’s messages, get an idea of what other people are sharing. We hope that through this drive we will not only collect 100 messages that can inspire other people but help 100 people come to appreciate just how motivating it is to give other people hope.

Jan3

Tuesday Q&A: Epifania Gallina

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dsc_0082-copyHappy New Year! I’ve been on a bit of a break from posting Tuesday Q&As, and I’m happy to host Epifania Gallina in this first post of 2017! Learn more about her experience with OCD, stigma, and her secret Facebook support group.

When were you diagnosed with OCD, and how did you realize you might have it? 

I was diagnosed with OCD in 2012 at the Columbia Psychiatric Institute as I participated in a research study for three days. At that point I had been severely suffering for two years and I knew I had OCD because my symptoms matched the criteria perfectly, but I was too afraid to find help because I was embarrassed. I come from an Italian culture that does not acknowledge the need for mental health, hence I thought I could just “get over it” on my own. I was also too afraid to go to a therapist because as we all know, OCD tells us not to find help because “the therapist will say it’s not the OCD, it’s us.” Don’t let OCD lie to you. That’s a big lie.

You run an OCD support page on Facebook called “Living on edge: Taking back your life through ERP.” For my readers who may not know what ERP is, can you explain? And what can members expect from the group if they join?

Yes! I spend most of my days peer coaching others with OCD and I would not change that for the world. I started Living on Edge a year and four months ago with the purpose of giving people a safe platform in which evidence-based (scientifically proven) information was posted and which limited compulsive behavior. This means that people can ask any questions, but I make sure that the answers given are not reassurance based (a compulsion), or a continuous thread of comments that are compulsive. This is not to point the finger at any other group because many support groups helped me when I needed a guidance; however, the majority of groups present too many compulsive posts and sufferers are distressed because they are receiving more and more reassurance (which works for a split second) and do not get additional support. My goal was to allow people to ask any questions they had but with a sole purpose: not giving each other reassurance or compulse together.

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The main component of the group is that of coaching one another with cognitive behavioral therapy techniques as well as other tools that might help. I always make sure I read the comments and guide everyone toward the more therapeutic side of things. I am also always available to answer people’s private messages whenever they send them to me. Exposure and response prevention (ERP) is considered the best treatment for OCD with at least 70 to 90 percent effectiveness in treating people. It consists in gradual exposure to the person’s obsessions with the focus of eliminating the compulsions surrounding the obsessional theme. Indeed, as scientists have discovered, it is not the obsession that we need to eliminate, because OCD themes constantly change, but the compulsion. Once the compulsion is eliminated, the obsession does not bother the person as much and at times it disappears. However, most importantly in ERP is teaching the person to accept uncertainty, which is a quality that is necessary to live a healthy life. Since OCD is a doubting disease, it consists in wanting the person to have 100 percent certainty in everything, whether it is contamination, relationships, etc. If the person does not understand something thoroughly then the OCD mind turns on it. In reality, there is no such thing as 100 percent certainty; hence, as we don’t really know what will happen to us in life, we cannot know if something is right or wrong, or if something will or will not cause us harm, but we can still live by our values.

In addition, we have billions of thoughts every day. ERP teaches us that we don’t have to escape the negative thoughts or figure them out. We have to learn how to accept them and choose those that are relevant to us because it is okay to let go of others. In a few words, thoughts are not facts, but we just have to let them be. This is truly hard for someone with OCD, but I promise, it is so worth it. ERP helped bring my OCD from moderate to very mild in two years of therapy. It is important to remember that many people still need to take meds in addition to having ERP based on the degree of severity. This is okay also. Never be ashamed of your path.

While you run the Facebook group and have support and understanding from your family, you don’t discuss OCD on your personal Facebook page. Why is that? 

Unfortunately, I am still not open about OCD with the world, and although discrimination in the workplace is not permitted, there are many stigmatizing factors that I have to consider, hence I cannot share with everyone. I hope that will change one day.

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You attended the International OCD Foundation conference last summer. Had you been to the conference before? What did you like best about your experience there?

Yes! I love the conference because every time I am around other OCD sufferers I feel like I can be myself. They are truly the kindest and most genuine people to be around. I consider them my second family. Everyone is so supportive of one another and there are tons of fun and informative things to do every year. In 2015, I attended as a volunteer and after that I started Living on Edge, so in 2016 I really wanted to speak and tell my story and that is what happened! My favorite moments of this year were the virtual camping (live exposures) and all of the peer support groups, as well as the main dinner and dance, of course!

What do you consider the biggest misunderstanding people have about OCD?

The biggest misunderstanding people have of OCD is that it is a perfectionistic disease or that it is not that big of a deal. OCD is a debilitating disorder, but it can also be conquered if treated on time and effectively.

If you could give just one piece of advice to others with OCD, what would it be?

You are not alone. There is help out there and you can defeat this disorder. Please, please, don’t forget that you are stronger than this. The International OCD Foundation has great information on finding help and support groups like mine that will guide you toward finding help. You can always contact me at epi91@hotmail.it. My support group is secret, so I can explain how to join it. Best to all!