Category Archives: Stigma

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 yearsbut 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.

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!

Tuesday Q&A: Mark Joyella

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mental-illness-awareness-181If you know me, you know I believe we all have the power to spread awareness, even if it’s to one other person in our lives, and that every little bit matters. A journalist with nearly 12,000 followers on Twitter, Mark Joyella is in a position to spread awareness far and wide, and we’re lucky enough that he’s willing to! I first heard of him when he wrote a great piece called “Screw stigma: I’m coming out” about his personal experience with OCD, and I’ve since learned he stands up against the stigma and misconceptions surrounding mental illness in general.

As a journalist, you’re in the public eye. And, right or not, people have certain expectations of public figures, so you took what some would consider a risk when you wrote “Screw stigma: I’m coming out.” Why did you decide to disclose that you have OCD? How was the piece received?

I had grown increasingly concerned about the content of news stories and how mental illness was being handled — it felt to me that instead of illuminating the topic, some of the reporting merely reinforced stereotypes. I felt that failing to disclose my own illness —  and refusing to speak out because I didn’t want my illness public — had become an unbearable situation. The reaction was exceptionally positive, and I immediately connected with other journalists who had revealed their mental illness — and others who weren’t ready to do so.

You note in that piece that you were never shy about telling co-workers about your physical symptoms and ailments, and refer to being recognized during a colonoscopy as “a decent anecdote.” But you weren’t willing to talk about your mental illness in the same way. Tell us why.

I think most people look at physical illness as something that happens to you, while mental illness, unfairly, is seen as who a person is — that’s why people with mental illness often feel judged or blamed. There’s also a kind of bond in sharing stories of physical illness — even the awkwardness or unpleasantness of the illness or the treatment — that makes sharing stories an easy thing to do. But with mental illness, there’s no guarantee how you will be received, and no way to know if anyone will identify with what you are experiencing, even though the statistics tell us it’s highly likely in any given workplace there are several people who are in some way touched directly by mental illness.

When were you diagnosed with OCD, and how did you realize what you’d been going through might be OCD?

OCD was first mentioned to me by a therapist as we were working on my struggle to break out of personal isolation — there were tons of fears that kept me inside my home and not living. But because I was able to get to work and even travel extensively on stories, I wasn’t aware of how isolated and afraid I really was.

After you were diagnosed, how did you feel? How did you go about treating your OCD symptoms?

On the one hand, it’s nice to know there’s an explanation for what you’re experiencing, and I liked that. But OCD? Because I don’t have outward compulsions, it was hard to accept at first. But a psychiatrist agreed with the diagnosis, and off I went. I began studying up on the disorder, began taking medicine to treat it, and I began to get better.

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People often ask me how I told my loved ones that I’d been diagnosed with OCD, so I’ll pose the same question to you: Who did you tell, and how?

I didn’t tell anybody at first. The only person outside my doctors who knew was my girlfriend — now my wife — who had struggled with the walls I had put up to protect myself. She had suspected OCD, but I must admit it sounded like a wild idea until the “experts” said, yep, that’s it. The rest of my friends and family learned of my diagnosis when I wrote my story. Probably not the best way to bring it up — but it worked, and I’m sure I would’ve lost endless amounts of sleep trying to prepare for a conversation about it — this way the band-aid came right off and I didn’t have to begin the conversation at all. “I read your story,” people would say, and we would talk about it. For me, that was the easiest way: I threw it out there all at once.

What advice do you have for my readers who want to advocate for OCD awareness but don’t know where to begin? And what if they’re worried how people will perceive them?

I’ve been massively impressed with the ways people advocate for OCD awareness — with small steps and giant efforts. There’s a way to do it for every person. I’ve used social media to call out news stories that I felt were poorly done, and to try and boost the signal for people who have good stories to tell. But sometimes the smallest actions — like seeing a person on Twitter who says they are suffering with the illness, and responding “you’re not alone” can have an impact. Imagine hearing that from a person in a country far away when you really, really needed to hear it.

I admire how open you are on social media, and how willing you are to call people out when they’re being ignorant. I laughed out loud at this one. I’ve been insulted and even sworn at for doing similar things. Have you ever really gotten into it with anyone?

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I’ve had fellow reporters get very defensive when I criticized the words they used in stories (one example: a reference to a person with mental illness “escaping” from a “mental institution.” I wrote: “do you mean a “patient” fleeing a “hospital”? The reporter blamed the law enforcement agency for using the terms, and said he was merely repeating what the “official” information was. I said, you know, you don’t have to repeat stigma-reinforcing language. And people get really offended when you call out OCD jokes. They never meant any harm and they can’t believe you are attacking them for turning OCD into a punchline. But man, I hate those jokes so, so much.

On a broader level, you’ve worked on several pieces addressing how the media reports on mental health in America — for example, it seems that whenever there’s a mass shooting reporters feel comfortable diagnosing the shooter with some mental illness or another. What can reporters do differently — and better?

Reporters can get educated. There are tons of resources — around the world — for journalists to learn more about what mental illness is, how common it is, and how not to fall into the traps of writing stories that are filled with inaccurate assumptions.

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

It’s OK to not be OK. Recovery is not a straight line, and I find that great weeks when I push my boundaries and challenge my fears, are often followed by weeks when I need to step back and while it’s tempting to see that as a failure or setback, I think it’s like resting a sore muscle after pushing it hard during training. You don’t just get stronger and stronger. You push, you rest, you get stronger, you push again.

Tuesday Q&A: Stuart Ralph

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a30rzkotI’ve recently gotten into podcasts (did you know they’ve been a thing for, like, years now?), so I was happy to come across the aptly titled The OCD Stories, a well-done, inspirational podcast and website run by the fellow I’m hosting today: Stuart Ralph. I haven’t had the pleasure of meeting Stu in person, but I feel like I know him, at least a little, through his project. Thanks for being here, Stu, and for your thoughtful answers!

You’re behind the incredibly uplifting “The OCD Stories: Real stories that educate and inspire those with OCD.” You interview individuals with OCD as well as therapists on your podcast, and you also publish personal essays. How did this all come about?

Firstly, thank you. Praise is always appreciated. It came about from my own desire to read uplifting stories. As part of my recovery I started blogging on stuartralph.com/blog with the aim of sharing what was and wasn’t working for me. I found myself during spikes, as a lot of us do searching the internet for stories that relate to my own, so I could be reassured that my symptoms were OCD and not real desires, i.e., to leave my partner, or having sexually assaulted someone etc. I realized that these stories were scattered all over the internet, and I wanted to create a website where stories about OCD could live in one place. I wanted our stories to not be a source of reassurance as we all know this won’t help in the long term, but a source of inspiration and education. A place where people could talk about their struggles but also what is helping them. Recovery-focused stories. The OCD Stories was launched. A few months later I decided I needed to do more, so I created The OCD Stories podcast. I wanted to interview the greatest minds in mental health to offer the listeners good advice and also look into what the future holds for OCD treatment.

It took me years and years to figure out I had OCD, and I finally got help when it seemed that my obsessions had spilled into everything and made being around even my own family difficult. How did you realize you might have OCD, and why did you seek help? Did you have any sort of rock bottom experience, or certain obsessions that seemed particularly stubborn?

Like yourself it took me years also, 10 to be precise. I always felt like I was living a kind of super hero life. Not because I had any cool super powers but because I had to spend so much of my childhood hiding my weird behaviors and disturbing thoughts. I felt that if I spoke up and told my family I would be locked away for being a “nutter.” Stigma was paralyzing me and prolonging my pain even at that early age and I wasn’t aware of it. Harm OCD was my main problem growing up. Constantly have to do checking compulsions, mental checking, repetitive actions, and symmetry compulsions to stop my family being killed, innocent children in Africa being harmed or me being lost in another dimension alone. It was all very painful and frustrating, especially as I didn’t know what was happening. It got critical when BDD came into my life. I was obsessed that I was a freak because of my appearance, and that no one would ever love me. This went on for a couple years in my early teens, to the point of contemplating suicide. Most of my day was based around hiding my ears, including growing my hair and using hair products to stop it moving as to not reveal my ears. My mind at school was focused on playing small and not showing people the freak I was. In hindsight I love who I am inside and out, but at the time my mind made me believe the most horrible things. I eventually had enough and wanted to find an answer. I searched Google for answers typing in my symptoms to get multiple web pages describing the mental health condition OCD. The more I read the more I could relate. It was if they were writing about my own life. This was such a relief. I was 16/17 at this point. I finally got up the courage to call my doctor and make an appointment. I went through the NHS, and saw a psychologist. But didn’t do proper treatment until I was 27. The NHS is great, at the time mental health resources I believe were limited. As my compulsions at the time weren’t dominating every waking second I was asked to give it some time and read some OCD self-help books. If they didn’t work, I was recommended to come back and they would put me through CBT. I think my positive attitude didn’t help because I downplayed my symptoms to the psychiatrist, wanting to look like I had some control over my life. I continued to struggle for another 10 years, OCD ebbing and flowing in strength. At 27 I decided enough was enough and went privately to treat my OCD. I saw one peer support coach (Mark Freeman) and two therapists, all having positive impacts on my OCD and overall happiness.

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Once you were diagnosed, how did you feel, and how did you go about treating your OCD symptoms?

I felt normal for the first time in my life. Understanding what it was allowed me to see OCD as the problem not me, this allowed me to speak to my parents about it. Sharing for the first time with them what had been going on in my mind. My mum went shopping with me to buy some books on CBT and OCD, it was awkward for me, but nice to not be alone any more. As for treatment I will offer advice from when I was 27 because this is when I faced my bully. I did ERP to get rid of my physical compulsions. But in my twenties my mental compulsions were stronger and more entangled than any outward compulsions, so ERP helped but I thought acceptance and commitment therapy (ACT) helped me more with the obsessions. Learning to distance myself from the thoughts and accept the anxiety and doubts, really allowed them to slowly dissipate. Adjusting my diet and exercise also helped in my recovery.

Part of your stated mission is “to be a beacon of light in the moments of darkness we have all had to endure, as a result of OCD.” The stories you’ve shared has certainly achieved that. How has helping others affected your life and your own recovery?

Anne Frank said “No one has ever become poor by giving.” Creating this website and podcast has allowed me to connect with so many great people, and help those who need it. The OCD Stories has given me a community which is important for recovery and a purpose.

Have any of the stories especially resonated with you? 

I love every story I’ve had on the website. Each one has something that I can relate to, or that touches me profoundly. One person shared that a therapist had told her she was a hopeless case. That shook me. In this day and age, such statements should not be made. We must never remove hope from the equation. On a more positive note, most of the stories end on a very selfless note offering hope to the reader—this always moves me. It is a testament to the great people OCD sufferers are.

What advice can you share with people with OCD who may not be comfortable sharing their stories yet? 

We publish stories anonymously sometimes. It’s OK if you’re not ready to use your name, I get that it is scary and can be a risk. Sharing your story I have found to be such a cathartic experience. Putting it down on paper (or word) can help you make sense of it all, and by focusing on helping the reader it can inspire you. If you wanted to share your story, I’d be happy to publish it anonymously. Or just write it for yourself as part of the healing process.

You’ve been chipping away at the stigma around OCD. If you could erase one misconception with the swipe of your finger, what would it be?

I would swipe away the ignorance around mixing OCD with OCPD.

And since this isn’t a perfect world, what can we do to erase that misconception with the tools we actually have, bit by bit?

I come from a media and marketing background. Marketing is all about perception. Same for OCD, or anything really. We can change the perception of OCD by writing, recording, and sharing accurate and positive information about OCD. So we effectively drown out all the hyped-up nonsense and misconceptions around OCD. We as sufferers, and/or therapists, can achieve this by writing blog posts, doing podcasts, filming videos, sharing our stories, or writing articles on OCD. We can even correct people when they misunderstand what OCD is in front of us. But if we do this we must remember to remain humble, and kind in our correction of their innocently naive blunder.

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

Learn to love the question mark. When we learn to live with the doubt and uncertainty and slowly become OK with not knowing, we drain OCD of all the power it has over us. It’s not easy, but it’s possible.

Tuesday Q&A: Denis Asselin

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Denis on his pilgrimage

Welcome back to Tuesday Q&A! I admit the hiatus wasn’t exactly planned; life and the holidays conspired to throw me off schedule.

I couldn’t be happier to kick off the New Year with this post from Denis Asselin, an amazing advocate who’s been working tirelessly and with compassion to spread awareness about body dysmorphic disorder (BDD) since his son, Nathaniel, committed suicide after struggling with the disorder for years.

We all know how misunderstood OCD is, and it’s possible BDD is even more misunderstood. Denis is working hard to change that. His dedication is inspiring — and, honestly, he is so nice. Incredibly, genuinely nice. You can’t help but want to help him tell Nathaniel’s story and join his cause.

I’m always amazed to see what a parent is capable of after the tremendous pain of losing a child. After your son, Nathaniel, committed suicide you took action. Since 2012 you have participated in your initiative, “Walking With Nathaniel,” walking thousands of miles and raising thousands of dollars to spread awareness of the illness that led to Nathaniel’s death, BDD. Tell us why.

What does a parent do when s/he loses a child? Initially, cry a lot. What an incredibly sad event! Losing a child is the ultimate loss, and definitely not the natural order of things. The event and its repercussions were so significant. We were like ants at the base of Mt. Everest, required to climb to the very summit. I not only lost my personal and spiritual “equilibrium,” but initially I also lost a sense of purpose for living. As a father, I’m instinctually programmed to preserve and protect my children, and through no fault of my own, it felt as if I had failed in that critical mission. So what’s next when the void looms so large before you?

I distinctly remember seeing myself at a junction, the intersection of two possible paths to take for the rest of my life — one was to inevitably fold into myself, live in constant self-pity, be perpetually grumpy, and see myself as the ultimate victim. The energy required in the choice of that particular path would be dark, negative, and all-consuming. My social arena would close and include no one else; I would be a hermit and I would yell and blame everyone for everything, consider the universe totally unfair, and spread an aura of darkness wherever I found myself. The other road led to slow and progressive healing, to an eventual reordering of my life with what is (not what should have been). Bitterness would eventually melt away, and new possibilities would slowly reveal themselves and emerge. I would slowly see beauty and light pierce the huge darkness and recognize once again the gift of possible life and living before me, rather than a death in life. That vision/possibility included a forward movement — first in small steps and then in bigger ones. To me, walking forward reflected that outward expansion and healing.

After my wife, Judy, and my daughter, Carrie, and I returned from Spain where we had walked for three weeks on the Camino de Santiago after Nathaniel’s death, I felt as if I had more walk in me. Every time I took a step forward, I felt much better. At first I started to walk in circles (daily walks around the neighborhood) in wider and wider concentric circles. It was during those circular peregrinations that I hatched the plan to walk in a line rather than in a circle from our hometown (Cheyney, PA) to Boston, MA. I envisioned a new kind of “pilgrimage” à la El Camino, but here in the USA instead — a personal spiritual and physical journey of healing. I asked myself, “What would it look like to walk out my front door and go to Boston (the home of the International OCD Foundation), connecting along the way all the happy and sad chapters/places/events in Nathaniel’s life like dots on a trail map (where he was born, where he went to school, where he got his first job, where he died, where he was first hospitalized, where he stayed in clinics and treatment centers thereafter, where he had appointments with his doctors, psychiatrist, psychologists, and counselors)?” The imagined trajectory spanned 552 miles to Boston where he had spent an entire day in the Emergency Room at Mass General back in 2009 desperately seeking help because he couldn’t do “his life” anymore. I wanted my pilgrimage to end at the Boston harbor, at the water’s edge (just like Finisterre over the cliffs of the Atlantic in Spain at the end of the Camino). I would then face toward the east where the sun rises — again a symbol of an opening rather than a closure. That is how the Camino de Nathaniel was born and executed in 2012.

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Denis walking with Nathaniel

Tell us about Nathaniel. What kind of kid was he? What was he passionate about?

Nathaniel was an amazing human being. His spirit could fill the room, so could his physical presence — he was tall, handsome, fit, intelligent, highly responsible, sensitive, compassionate, loving, magnetic, funny, engaging, strong, athletic, generous, quick of mind, creative, energetic, positive, in brief a very old soul. I’m not saying this because he was my son. I recognized his incredible gifts and talents starting on the day he was born. He stared me in the eyes letting me know he was ready to journey forth. His close friends, Judy, Carrie, and extended family members would also describe him with the same litany of adjectives. Everyone loved Nathaniel. His force field was so strong. Everyone wanted to be his friend. Everyone wanted to be in his presence. Unfortunately, OCD/BDD slowly gnawed away at these incredible positive attributes during the long years of his illness. But even in the depth of his sickness, those deeply rooted qualities still radiated through in some recognizable measure. He was passionate about running, playing, and engaging in creative and imaginative games, staying fit, and doing his very best at all the time.

When was Nathaniel diagnosed with BDD, and how did you realize something might be wrong?

Unfortunately, the BDD diagnosis came much later during his 13-year illness, when he was 17. He was hospitalized at 11 for OCD behavior (but somehow the diagnosis seemed incomplete and not totally accurate). Then we began to see him spend more and more time in the bathroom grooming himself, worrying about flab on his tummy (there was actually none there) and imagined dark circles under his eyes, the placement of his hair, and the quality of his skin (any marks on his face would ruin his day and keep him in the bathroom for hours picking at it). He spent less and less time with his friends and worried more and more about his appearance and looks. He would look away and avoided eye contact. He shaved in the darkness in the bathroom, and returned repeatedly thereafter checking on imagined flaws on his face that he saw in the mirror. He literally got stuck in the mirror and the bathroom for hours on a daily basis. His social circle and connections began to get smaller. His social life slowly diminished. School became an issue. He would always overdo his assignments, not be able to live with anything less than perfection, and even be hard on himself for not knowing in advance what a teacher was going to teach him that day before s/he did. We had to withdraw him from formal schooling by his sophomore year in high school. The initial change in personality and in behavior came quickly at age 11 and then it was the unpredictable roller coaster ride up and down during the subsequent years as therapists, counselors, doctors, and we tried to understand what was going on with our dear boy/young man.

Why do you think so few understand what BDD is? How would you explain it to someone who has never heard of it before?

BDD is poorly understood because it hadn’t been recognized as a disorder until the mid 1980s. Katharine Phillips put the brain disorder on the map with her famous book The Broken Mirror. Everything she described in the text, Nathaniel had and had experienced. Although the disorder label was publicly available, very few therapists recognized its behavioral manifestations in their patients. If you were tall and handsome and beautiful like Nathaniel, would you feel comfortable announcing to others that you were obsessed all day with unrelenting worries about your looks? Folks would think you were vain. So, in general, sufferers tend to say nothing. They simply suffer in silence. Unlike the other OCD-related disorders, BDD self-awareness is rather poor. We now know that a BDD sufferer has perceptional processing problems, which accounts for the distortions described above. Nevertheless, what a sufferer sees, s/he totally and truly believes to be true. It is difficult for that person to achieve any level of objectivity. It affects up to 2% of the population. That’s a high percentage rate, yet mention BDD to anyone on the street, and you get a blank stare in return. Nobody seems to know it. Given the high suicide rate in the rank of BDD sufferers, we have a fatal illness on our hands, in my opinion. Medication dosage administered is usually twice as high in BDD cases than for the other OCD-related illnesses. Effective treatment protocol needs to be slowly and methodically administered if the sufferer is to experience any kind of relief. Of course, there are various levels of BDD illness. In hindsight, I think Nathaniel had the worst case of it. Although we sought the help and advice of the best professionals in the field, Nathaniel’s BDD progressed. There were some moments of hope for healing along the way, but the relapses were cruel and drove him even further down into the pit of despair. He could not imagine growing old with this impossible illness, and adopting a lifestyle that would require regular medication, counseling and, perhaps even occasional in-patient treatment as a tune-up. For Nathaniel, this was not a life to live for!

How is BDD related to OCD? Do they share any treatment methods, such as therapy or medication?

The obsessive behavior of BDD sufferers is similar to what we see in OCD. However, there are many differences. I do know that the SSRIs used in treatment for BDD are almost double in dosage for effective treatment than those used for regular OCD patients. Although there are day clinics and treatment programs specifically for BDD patients, those sufferers who need hospitalization or overnight surveillance are usually grouped with OCD-ers. Good BDD therapists would suggest that the treatment protocol be administered at a slower pace and that CBT treatment be more specifically tailored to this disorder. Of course, addressing the perceptional distortion remains key to healing. This would require visual retraining that works in tandem with the long-term behavioral restructuring required for control of unwanted thoughts.

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Nathaniel

Let’s pretend I’ve said the following to you: “The issue is that people today are just too caught up in material things and their looks. If they would just stop being so vain and focus on their inner beauty this wouldn’t be a problem.”  

A BDD sufferer is anything but vain. H/she is a silent sufferer of his/her illness. The inner turmoil is constant and very unrelenting. Sufferers usually don’t dare to mention what’s on their mind 24/7. Why would they? No one would believe them based on what the observer sees. Reassurance given by others is only a temporary patch of relief. It never lasts long and only fuels the retched beast. Unfortunately, those who are rich and have the financial means have recourse to plastic surgery as a temporary solution to their angst. Unfortunately, those procedures only give temporary relief, if any. Think Michael Jackson — so many surgeries that eventually his whole face totally appeared distorted by those interventions. But he had the money to pay, and no doubt the plastic surgeons involved didn’t dare to question the patient’s motive to assess whether or not BDD was the root of the malaise. I’m so appreciative of Reid Ewing, the actor on ABC’s Modern Family, who recently came out and publicly announced that he suffers from BDD and that all the plastic surgeries he underwent did not help one bit. What is more worrisome, however, is that those same surgeons never dug deeper to discern whether or not he had BDD, a brain disorder. Now that’s really unprofessional behavior.

It seems that people assume mostly women suffer from the disorder. Has anyone expressed surprise that your son had BDD? 

Good question. I think statistically the number is practically 50/50. Women and our cultural focus on women and fashion would suggest that BDD be more evident among females. However, muscle dsymorphia with men is gaining greater recognition these days — men who focus on their bodies, their physical build, their muscles, and their general appearance and body proportions. Our culture of aggressive advertisement that celebrates bodily perfection does not help the BDD cause, for sure. However, it was interesting for me to learn that there are even cases of BDD in remote villages in Africa where such cultural distractions and focus are absence or negligible. Check out Argentina where plastic surgery for woman is now a cultural phenomenon. How an Argentinian woman looks and the public and private discourse about her weight and size are quite disturbing phenomena, in my opinion. The culture is indeed playing a role in nurturing BDD.

What advice do you have for my younger readers who may be suffering in silence? How could a teenager approach his or her parents for support — and what if parents don’t understand and refuse to believe there’s a problem?

Don’t suffer in silence and in isolation! Find someone you can trust and describe what’s going on inside your head, even if it sounds a bit silly in the telling. Be sure you open up to someone who is non-judgmental and a really good listener. Let him/her know how painful your daily journey is. If possible, create a team dedicated and committed to your ultimate healing (parents, siblings, and even a good and close friend, etc.). Check out the new BDD website at IOCDF launched a year ago. There is something there for everyone — sufferer, parent, sibling, educator and professional. Invite your team to consult this rich resource too. Be sure your therapist/counselor/psychiatric/psychologist knows something about BDD and is well read and well trained in the treatment protocol. Strongly suggest that your family read the most recent literature about BDD, starting with Katharine Phillips’ book The Broken Mirror. Let them know that there are now specific treatment protocol manuals available, including one co-authored by Sabine Wilheim. But more importantly, try to understand that your brain is physically broken and that is why you are experiencing what you are experiencing. The bio-chemical process is physically responsible for the perceptional distortion. And don’t forget to add into the mix daily meditation, regular exercise, and good nutrition as ways to help support your efforts to heal. Let your personal mantra be, “I can do this. We can do this. I’m not alone. We are a team working together so I can heal. I deserve to be well and whole and complete in life!”

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Denis and his wife, Judy

How can people get involved in spreading awareness?

Getting the word out is not easy. If BDD affects 2% of the population, there is a good likelihood that someone in your life is impacted by this awful illness and is suffering immensely because of it on a daily basis. And worse still, no one knows! Check out our Walking With Nathaniel website. It is the personal story of one sufferer who did not deserve to suffer so cruelly. Let my awareness efforts inspire others to do something rather than feel victimized. Join the annual IOCDF 1,000,000 steps for OCD Awareness Walks in June. Can’t make it to Boston? Create your own awareness walk. No matter how small the team or the event, when you connect with other walkers physically or virtually, the community of supporters becomes larger and awareness grows incrementally, a step at a time. That is how all journeys begin and move forward. Moving forward beats staying still and stagnant. For me, it is definitely the ultimate balm for body, mind, spirit, and soul.

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

Please seek help! And remember, you are not alone! There are folks out there who want to help and can!

Obsessive Christmas Disorder

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By now you’ve probably heard of the controversy over a holiday sweater Target is carrying this season. It reads “OCD Obsessive Christmas Disorder.” On the surface, it’s “just a sweater.” At least that’s what people keep telling me. They’ve also told me it isn’t making fun of OCD, and that “compulsive” is a pretty key word to the whole term. Of course, I think “obsessive” and “disorder” are pretty key words as well, and they’re included on the shirt.

An alternative title to this blog post could be “When Advocacy Turns Ugly” because I’ve been getting some nasty tweets in response to the one I sent to Target on Tuesday:

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Usually when I open Twitter I’ll have somewhere between two and five notifications. The morning after I sent this tweet I had 22. What?! I soon realized why: My tweet was included in a Mashable article about the issue.

I didn’t attack anyone or call anyone names, but you wouldn’t have guessed that from some of the responses. I’d include screen shots of them here, but so many of the people who initiated an argument with me ended up blocking me. Here’s a general sampling of quotes, though:

  • “THIS IS SOMETHING THAT ACTUALLY MATTERS. GET THE FUCK OVER IT.” (Alongside a photo of people protesting rape — for the record, I am against rape as well as the perpetuation of stigma and misinformation. Empathy is a superhero power I have.)
  • “She’s just doing this to get attention for her book. Take a seat.”
  • “If you can’t see the humor in anything — what a sad person you are.”
  • “We the people should not have to be forced to deal with your situation.” (Very presidential sounding!)
  • “This PC bullshit is out of control. JUST STOP!”
  • “Stop trivializing people who can separate reality from a sweater.”
  • “Just because you wrote a book does not mean you know everything.”

The last one is priceless because the person linked to an article written by my friend and fellow advocate Janet Singer, in which she noted how beneficial it can be to use humor as a coping method. Nowhere in the piece did Janet suggest that being made fun of is an effective therapeutic solution. Her point was that being able to laugh at oneself can be helpful.

Now this I laughed at! (Thanks, Janet, for defending me when I invited you into a less-than-fun conversation.)

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The OCD community is pretty tight-knit, so in the future I’d do a little research before pitting us against one another.

In the midst of all of this, a reporter from KARE 11, the Minneapolis NBC affiliate, asked if I’d be interested in chatting about the topic. Since I’d already seen so many icky tweets I was nervous about more backlash, but of course I said yes to the interview. I won’t read the comments on the piece, so I don’t know if people are bashing my views or not. In this case ignorance is a little blissful, if not a means of self-preservation.

What I can’t believe about this whole social media war is how many people have told me I must not have a sense of humor because I didn’t find the sweater funny. I love to laugh! I love The Simpsons, Bob’s Burgers, Dumb and Dumber, Parks and Recreation, The Office — I’m not exactly highbrow. I probably joke too much, in fact. But OCD isn’t funny to me. Call me all the names you want — if you must — but it’s very difficult to see the humor in something so painful. My obsessions made me wish I were dead. When I was in my darkest, lowest points I thought there was no way out. The tremendous guilt I felt was overwhelming. Come up with a clever pun to make me laugh. If you’re my dog, chase your tail. You can even make fun of me! But don’t trivialize the single worst aspect of my life and tell me to get over it. And please don’t swear at me. Geesh. That’s just rude.

I may be thin-skinned, but I wouldn’t have it any other way. My empathy doesn’t begin and end with OCD. I will stand up for any marginalized group and won’t back down just because some mean people think I’m whining. Taking a stand is how we effect change. Pushing an unpopular opinion and being shouted down and harassed isn’t easy — but that doesn’t mean it isn’t right.

So, yes, this week has been strange. But the mean tweets were just a part of it. I also got wonderful notes and messages from people thanking me for working on their behalf. That’s who I do this type of thing for, others with OCD whose voice isn’t quite out there yet, for whatever reason. I can’t speak for everyone, but I will voice my opinion in the hopes that it will bring about change for all of us.

Tuesday Q&A: Clint Malarchuk

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ClintCoachingWelcome to Tuesday Q&A! This week we’re hearing from Clint Malarchuk, a man who is supposed to be tough, who isn’t supposed to admit to feeling weak — but he’s shattered misconceptions and is speaking out, particularly about his struggle with OCD, to help others.

Clint is tough, by the way. And he’s really, really nice. Really. I introduced myself to him and his wife, Joanie — who’s also incredibly nice — at the OCD Conference in Boston. They were the keynote speakers, so I recognized them from their photo in the conference program — and then everything started to come together and I realized I’d heard of him before.

Maybe you have, too. Clint was an NHL goalie who made headlines and shocked TV viewers in 1989 when his carotid artery was slashed by St. Louis Blues player Steve Tuttle’s blade during an attempt at a goal. (I’ll spare you the link to the video–finding it is up to you.)

Clint is lucky to be alive, and he’s not likely to be forgotten anytime soon. But his legacy will last far beyond this one bizarre, life-threatening incident: He’s become an advocate for mental health awareness. He’s a voice for other men who aren’t comfortable talking about mental illness, and his story of survival — off the ice — serves as an inspiration for us all. He shares it all in his new book, A Matter of Inches: How I Survived in the Crease and Beyond

You’re a well-known guy, and as you mentioned in your keynote, it’s largely because you had a horrific accident on live TV. One cause of OCD is a traumatic event. Do you think this accident contributed to the onset of your OCD symptoms? What effect did it have on your day-to-day life?

Yes, the trauma really set my OCD off. I certainly already had OCD, though. As a kid I struggled a lot with germs and worrisome thoughts, usually about my mother’s health and safety. I went through different phases of OCD, and even some times where my OCD wasn’t seemingly there. After the accident, my OCD became so magnified: Intrusive thoughts, checking, worrying, along with severe depression. It was difficult to leave the house. This all seemed to worsen within months after the accident.

I was born and raised in Minnesota, and I often say I grew up at the hockey rink. I’ve always thought goalie would be the most stressful position on the team, with the pressure of guarding the net against that tiny puck, hearing the crowd gasp and then groan in unison if it gets through — not to mention the fear of it flying at you with sometimes incredible speed. Did having anxiety affect your performance as a goalie? Did being a goalie cause anxiety?

Being a goalie in the NHL is said to be the most stressful positions in sports. All factors considered, I’d have to agree. With stress comes anxiety. Leading up to games my anxiety would increase immensely. As a result, so would my OCD symptoms. After games I would have a small window of reprieve. Looking back, how I managed to play at the highest level is beyond me. OCD did help me with game preparation. The anxiety was at times unbearable before games. Thank God, once the game started, I was able to perform and the anxiety would leave.

ClintNetAlthough you were diagnosed with OCD fairly early on you managed to slip through the cracks of the treatment system a bit, getting refills on medication for 12 years without ever seeing a psychiatrist. Knowing what you know now, what would you have done differently following your diagnosis?

Not having to really check in with the team doctor was a big downfall for me. I thought as long as I took my medication I would be fine. I could just tell the doctor I need a prescription refill and that was it. Over the years my body got immune to the meds and I definitely got worse. I think it was so gradual that I didn’t realize how bad I was getting. Knowing what I know now, I would have educated myself better and seen a psychiatrist regularly.

You reached a point when you attempted to self-medicate with alcohol, which led to an addiction. Here you were dealing with OCD, PTSD, depression, and addiction. Life had become so unbearable you attempted suicide in 2008. We all have our own ideas of what rock bottom means, but that must have been yours. How did you move on from that moment?

Looking back on my life, I would say I hit more than one rock bottom. At certain times my OCD was so unbearable that I just wanted to die. In 2008, my attempted suicide was a result of one of those states of mind. The only difference is that this time I acted on it, and I am very lucky I didn’t die. I ended up getting the real professional help I desperately needed, but I hope others get help before reaching this sort of rock bottom. Acceptance is a huge word here! I had to accept how sick I was. I had to accept things and go forward and get well. I also had to believe that I could get well, and be happy. I had to accept that it would take accountability on my part. I had to do the work that was required on my side.

You weren’t exactly thrilled about checking into treatment, but your wife, Joanie, gave you no choice. What can you tell my readers who may be hesitant about getting the help they need, even if it means residential treatment?

Checking into a treatment center was where all this began. I was so scared, the fear was paralyzing. I did not want to be admitted into a facility. I was forced into it. My wife and the NHL team I was coaching for insisted on it. Well, thank God they did — it changed me. I got on the right medication, I got educated, I learned tools, and I got healthy. I was so extreme that I don’t know that outpatient therapy would have done the trick. It was life saving and life changing.

ClintandJoanieIt goes without saying that having OCD is hard for us. But it can also take a toll on our loved ones. Joanie stood by you through some of the darkest moments of your life, and it couldn’t have been easy for her. Do you have any advice for my readers whose family members have OCD?

OCD is torturous for us sufferers, but it really hits the whole family as well. When I went into treatment, it was a dual diagnosis facility. Meaning I had to work on my OCD and my self-medicating with alcohol. My wife, Joanie, went to a five-day family program. This was a big turning point for her and us as a couple. Our marriage was in shambles. It was there where she learned about me and my disorder. She was educated and advised. The other families shared their experiences dealing with their loved ones. The biggest thing for Joanie was understanding that I was sick, that the OCD was not who I am, but what I had. There was hope and support for her. Education for family members is crucial, as is counseling.

You’ve noted that men often feel uncomfortable discussing mental illness, that they think they need to be indestructible. As an athlete in one of the rougher sports you especially felt the pressure to remain stoic, but you’ve since written a book and have given several candid interviews. What was the turning point that convinced you to start talking about your struggles with mental illness? 

I think being open in my interviews and getting feedback from fellow sufferers really helped me realize that I was not alone in my struggles. My candidness helped other people, and men started reaching out to me as well. Surviving a suicide attempt, waking up out of a coma with a bullet in my head, really made me reflect: Why was I spared?Why was I successful in that I played in the NHL? Why did I have all these demons through my life? Well, I put it all together and figured the success gives me a platform to speak publicly. Conquering my demons gives me something to speak about, and help those still in the dark places, still struggling. The book was the hardest thing I’ve ever done, but it’s been the most gratifying as well. The emails and conversations from people who read it makes it all worthwhile. Playing goalie in the NHL, you have to be tough, both mentally and physically. Men see that and know I did it while struggling with OCD and other problems. I guess I’ve made it easier for them to admit they’re struggling too.TheCrazyGame

You’re doing well now. How do you stay on top of your symptoms and prevent relapse?

Today, I have to be accountable and do my part to stay healthy. I stay on top of my medication and doctor visits. I try to work out regularly. I meditate to keep balanced. I go to meetings. I support others and be of service to others. I’m grateful every day. I try not to take anything for granted. My wife and family mean everything to me, so I have to be healthy for them. They’ve seen me at my worst and I want to be there for them in every way I can.

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

You don’t have to suffer. It was a long, hard road for me getting well — today there is a lot more help for us. Get help. I know I couldn’t have gotten better by myself. The OCD Conference in Boston really encouraged me. We’ve come a long way in research, medication, therapy, and support. Never feel shame in being ill with something that’s not your fault. Have hope…because it’s real.

Tuesday Q&A: Shala Nicely

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It’s Tuesday, and you know what that means—we have a Q&A! This week we’re hearing from Shala Nicely, whom I first heard of when I pitched a blog post to the International OCD Foundation (IOCDF). My superduper so original idea was to draw parallels between overcoming OCD and the lyrics from “Let It Go,” the hit—and ubiquitous—song from the Disney movie Frozen. My contact there said they were already going to post a piece by Shala, but they’d be happy to get my take on it, too. Well, when I read her post I knew there was nothing I could add. It was brilliant.

Shala and I met in person on the dance floor at the OCD Conference in July 2014. If you’re not already planning to go to this year’s conference in Boston, consider it! Meeting amazing people on the dance floor is just one of many reasons to go.

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Shala and Jeff Bell

Not only do you work with patients who have OCD, you have OCD yourself. How did you first realize you might have OCD, and when were you diagnosed?

I always knew that my mind seemed to behave a little differently than everyone else’s, but I didn’t know it was OCD until my late 20s. At that time I was in general therapy, and I happened to mention something about liking the number 4. The psychologist asked a few more well-chosen questions and diagnosed me with OCD.

Once you realized what was going on, how did you go about treating the disorder?

Well, getting treatment wasn’t easy. I saw a couple of different therapists after getting diagnosed, but none of them mentioned exposure and response prevention therapy (ERP). So, of course, none of what they offered helped me, so I gave up on therapy. Eventually I tried medication, which worked wonders for me. Unfortunately, after taking the drug for a number of years I developed a rare side effect and had to stop taking my SSRI. My OCD came back almost immediately. I didn’t hear about ERP until I attended the IOCDF conference in 2010, more than a decade after I had been diagnosed.

In hindsight, I did not take enough responsibility for my own mental health in the years after I learned I had OCD. Granted, I didn’t have the information that’s available today on the Internet. However, I could have done some reading to find out what kind of treatment I needed. It never crossed my mind to do so because I had this implicit trust in the medical community. I’d received such good care as a child after being in an awful car accident that I just trusted that I could show up at a therapist’s office and receive the care I needed. But that didn’t happen. And that’s not all the therapists’ fault—I could have become a better advocate for myself and perhaps received the right treatment faster.

You work with patients with OCD, and you have OCD yourself. How did you decide to dedicate to helping others with the same disorder you’ve struggled with yourself?

When I went to the IOCDF conference in 2010, I had already been thinking about changing careers. I was so astounded to learn about ERP at the conference, because I had been in and out of therapists’ offices since age 16 with OCD-related issues, and I had never heard of ERP before. Clearly, there were not enough therapists doing this type of evidence-based therapy! So I decided that would be my career change—I would become an ERP therapist. I signed up for classes when I got home from the conference and started graduate school the next month. It’s the best career move I’ve ever made, because now I can help people with OCD get the right treatment a whole lot faster than I did.

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Although I learned how important it is to face my fears in order to overcome them, I never went through ERP with a therapist. To be honest, I sometimes regret foregoing it. How do you encourage hesitant patients to engage in ERP?

I’ve done most of my ERP on my own as well. After the conference I did group therapy to learn how to do ERP, and then I worked through my hierarchy on my own and with the self-help phone support group I started after the conference.

I encourage people who are hesitant to engage in ERP to identify their Greater Good, as my Beyond the Doubt co-founder, Jeff Bell, describes in his book When in Doubt, Make Belief. Once someone can identify how doing ERP helps them enhance their own sense of purpose and/or how it can help them be of service to others, they often find the motivation needed to face their fears and ultimately take back their lives from OCD.

Believe it or not, I still haven’t seen Frozen–and I have two little nephews. However, like most of America, I’ve heard “Let It Go” many, many times, and I just love your blog post detailing its similarities to your journey with OCD. Did it hit you right away when you saw the movie or heard the song?

From the beginning of the movie, I was struck by the similarities between Elsa’s “powers” and what all of us with OCD experience. Then, when Elsa started singing “Let It Go,” I was blown away by the lyrics—she was singing about me and my OCD! I grabbed a note pad, started taking notes, and then wrote the Aha! Moment that night right after watching the movie.

I love all of the other “Aha! Moments” you’ve written about on your website, too. Out of all those moments, did you have a bigger “aha” with one than the others?

I think the Aha! Moments about “the voice” of OCD and the Stockholm syndrome resonated most with me. My OCD can be so incredibly vicious, and self-compassion has been a wonderfully effective complement to ERP in helping me to quiet, and sometimes silence, that nasty voice.

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You were the 2013 keynote speaker at the OCD Conference in Atlanta. After keeping your OCD to yourself for so long, what made you decide to open up to such a large group?

I had three reasons for telling my story:

  1. I wanted people to understand what it feels like to have OCD: the gripping, unrelenting horror of a nightmare that OCD can cause. Sometimes OCD gets portrayed as “cute and quirky” on TV and in movies, and as you and I both know, there is nothing remotely cute about our disorder. I also wanted people to understand how important it is to get the right treatment as soon as possible—how OCD can morph, and grow, and stake its claim on more and more of the territory of your life the longer it goes untreated.
  2. I am also passionately committed to reducing the stigma that can be associated with mental illness. Would I be ashamed to admit I had asthma? Diabetes? Cancer? No. So why would I be ashamed of having an illness that originates in my brain? Why would that be viewed any differently than my having an illness that affects other parts of my body? Giving the keynote was a way to publicly embrace having OCD and to send the message that having OCD or any mental illness is not shameful. Reducing shame is so important to me. Shame keeps people from getting the help they need to reclaim their lives.
  3. Giving the keynote was my ultimate exposure. OCD had been telling me for so long that bad things would happen if I told anyone what went on in my head, and I knew I would strip the disorder of so much power if I did exactly what it was telling me not to do.

Do you have advice for someone wondering how to tell their friends and loved ones about their OCD symptoms? I had such terribly wrong and embarrassing symptoms I couldn’t imagine telling a soul.

I think the decision if and when to share specific OCD symptoms is very personal. I’m fine sharing pretty much all of mine, as breaking Rule #1 by sharing my obsessions is part of my recovery journey. I’ll be sharing even more of them in the book version of Is Fred in the Refrigerator?, which I’m currently writing. But I don’t think everyone needs to share all of their symptoms to get better. Sometimes telling a partner, best friend, or trusted therapist is enough. I think it’s important to educate the person(s) in whom you confide so that they understand OCD and can support you appropriately. I often recommend that my clients’ family members read Loving Someone with OCD for this purpose.

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

Never, ever give up. You can take your life back from OCD.

Tuesday Q&A: Chrissie Hodges

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This week we’re chatting with Chrissie Hodges, who I presented with at the OCD Conference in July 2014. I “discovered” Chrissie on an OCD Awareness Facebook page during the OCD Conference in Atlanta in 2013. She was recapping her experiences, and boy was I jealous! I couldn’t believe how many wonderful connections she was making in the OCD community—and once I knew she had a radio show all about the stigma of mental illness, I wanted to connect with her. Long story short, we hit it off when I appeared on her show and we’ve been in touch ever since. She was my trusty roommate at the conference, and we learned even more about each other then. I shared things with her I’d never told anyone before, so you know she’s gotta be good at drawing people out of their shells with compassion.

You’ll learn so much more about this amazing advocate by digging right into our Q&A, so I’ll stop blathering on!

ChrissieQ: You and I met when you interviewed me on your radio show, The Stigma of Mental Illness Radio. Tell us why you started this show.

A. I began the show when I was approached by a colleague who is into podcast radio who believed that I would be a good host. I was terrified! I initially told her no and then went home and freaked out that I had missed the opportunity! Luckily, she knew I needed to freak out and helped me figure out the logistics. Originally it was supposed to be a platform for individuals to tell their success stories, but it has turned into so much more! It has helped with my personal healing process, it is an incredible source of education, and its sole focus is abolishing stigma.

As we talked that day—you in Colorado, me in Minnesota—we learned that we had a lot in common. We both have pure O, for one thing. But you don’t just interview others with OCD. Have you had any particularly eye-opening interviews?

My first mind-blowing interview was with Chris Young, who is walking across the UK raising awareness about mental health. He has borderline personality disorder. His ability to be so candid and thoughtful about things that I didn’t understand and perhaps had my own stigmas about, such as cutting, lying, and disassociating, really marked a turning point for me and how I look at mental illness in general.

How has hosting your radio show helped you through your own recovery from mental illness?

How hasn’t it helped me is a better question! Mostly, it has confirmed that I am not alone in the emotional roller coaster of living with and dealing with mental illness and stigma. There are so many areas of my recovery that were overpowered by shame and guilt, and hearing that other people experienced the same things as I did has helped me learn to love and accept myself and my diagnosis.

RadioIt took you a while to realize you had OCD. How did you finally make the connection and get the proper diagnosis?

I was not diagnosed until I survived a suicide attempt at the age of 20. I was hospitalized for injuries and then spent time in a psychiatric hospital. I was diagnosed within 48 hours of describing my symptoms. I have mental rituals and compulsions, so my illness was virtually undetectable by anyone around me for 12 years prior to the suicide attempt.

After you were diagnosed you went through exposure and response prevention (ERP) therapy. I know how difficult that process can be, but I also know how glad you are that you did it. Why do you think ERP is so helpful in overcoming OCD?

ERP is a retraining of your brain. Before you are diagnosed and accept treatment, it is almost impossible to untangle the web that OCD has created in order to cope. ERP, although difficult, gives you a bit of a bird’s-eye view of what is really going on—even though it is hard to understand and even believe it is working in the moment.

What was the hardest part of ERP for you, and how did you get through it?

The hardest part of ERP were the secondary fears that come with OCD while in treatment. What if I really don’t have OCD? What if ERP proves I don’t have OCD and that my obsessions are real? What if my OCD is untreatable? What if I am the exception to the OCD treatment rule and cannot be helped? These were just maddening! But they are part of the process of learning to take the risk and live with the uncertainty.

You basically had long-distance ERP because your therapist was in another state. How did he help you stay accountable to the therapy when you didn’t meet in person?

My therapist was the only OCD specialist I could find on the Internet in 1998 and he specialized in my particular type of OCD. He was in New York and I was in Georgia. We did phone sessions weekly for several months. He was tough and strict on me from the very first moment we had contact. He said that if I wasn’t doing the homework, he would know immediately and he would not work with me. I was so desperate for help and he put the fear of everything holy in me so I took it very seriously! In the end, I believe that as long as a therapist is competent in how ERP works and the patient is willing to commit 100 percent, it doesn’t matter if it is in person or over the phone, it will work.

You’ve devoted your career to helping others with mental illnesses, OCD in particular. In addition to your radio show, you’re also training to be a peer specialist. What does a peer specialist do?

I am a peer specialist. I just got certified two weeks ago in Denver. [Editor’s note: Woo hoo!] A peer specialist uses their experience with a mental illness to help others navigate their way toward and through recovery. I look at it as a mentor of sorts. It is a person who lives successfully with their mental illness and can inspire encouragement and hope to those who are in the different stages of recovery.

Why did you decide to become a peer specialist? 

I had been working as a coach for Effective OCD Treatment with Matty Myles, helping clients with ERP plans, and loved the opportunity to be in the trenches with people who are fighting through their illness. It gives me the opportunity to be a cheerleader and see positive change firsthand. I wanted to take it further and work with all types of mental illnesses. I started doing some research, applied for a job, and here I am!734104_10151442647068554_1214475491_n

Tell us about Outreach Community in Denver (OCD).

Matty came up with the OCD acronym (he’s a punster!). Matty Myles and I are very passionate about connecting people who have OCD to foster community support. We wanted to nurture an environment of fun as well as education for people to have others to reach out to when they need information and support.

You’re also a public speaker—and a fantastic one, at that! Not only are you educating others about mental illness, I imagine it’s therapeutic for you as well. Has speaking so openly about your OCD symptoms served as exposure?

Yes, but it is still difficult for me. Pure O/intrusive thought obsessions bring a great deal of shame and embarrassment, which is why many of us kept them silent for so many years—we equated them as a reflection of our character sometimes even after diagnosis and treatment! I still get a twinge of fear and shame when I talk openly about some of the details of my obsessions, but it gets easier little by little. I try to remember that there could be at least one person in the room that is suffering and needs to hear my story to ask for help–that helps me to wipe out any reluctance I may have about full disclosure.

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

Just one piece! That is hard! My advice to those with OCD is that recovery is possible for anyone—you are not an exception! But recovery does not come without some really difficult work. Make the commitment to ERP and trust the process!

Reducing Stigma and Standing up for the Truth–Even When It’s Hard

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I recently wrote a piece for B Stigma-Free, a great new initiative that aims to–you guessed it–reduce stigma. Oftentimes I feel like I’m preaching to the choir when I write about how important mental health awareness is, and it’s in my day-to-day interactions with acquaintances and co-workers when I feel less confident in spreading the truth about what OCD is. Sometimes etiquette gets in the way of me correcting someone’s misconception about OCD, and sometimes I still worry that if I tell people about my own embarrassing obsessions they’ll judge me.

How do you deal with it when you tell someone you have OCD and they respond with a casual remark, like “I have that, too. My kitchen always has to be scrubbed clean!” Do you nod and smile? Do you explain that the person probably doesn’t have OCD, at least not based on that particular “symptom”?