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.

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.

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.

KymSon

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!

KymFamily

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.

kymDaughter

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.

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.

OCD HOPE DRIVE - APPEAL - national

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.

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: Morgan Rondinelli

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ocdcon-2015Please help me welcome Morgan Rondinelli to Tuesday Q&A! I loved getting to know her better through her answers, and realized how much we have in common — and not just in our OCD stories. When she included the “fun fact” that she recently declared a minor in writing, I knew she was a girl after my own heart. I hesitate to call Morgan wise beyond her years, but when I was 21 I had none of this figured out. Thanks for spreading awareness and living fearlessly, Morgan!

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

I was first diagnosed at 20, the summer after my freshman year of college, but I am pretty sure I have had OCD my whole life. As early as elementary school, there were weird behaviors I had to do, such as tapping the light switch when I left a room or “knocking on wood” a certain number of times if I thought about someone dying. I knew these were irrational and stressful, but I just accepted them as part of my day. I even remember being aware that my fears changed every couple of years. If a fear was particularly distressing, like the “knocking on wood fear” was, I would just hope that when it switched in a few years it would switch to something less stressful.

As I got older though, I began to realize that maybe my level of stress wasn’t “normal.” I even started seeing a therapist for more generalized anxiety and depression. I don’t think I thought my weird fears and rituals were relevant and something I should mention. My junior year of high school I took AP psychology, and after learning about mental illnesses, I think that’s when I first began to wonder if I had OCD specifically. I even chose to write my research paper on OCD, which was probably an excuse to read more about the disorder. Even after learning more about the disorder, though, and starting to think this was probably what I had, I still for whatever reason kept silent about it.

It wasn’t until I went to college that my OCD got severe enough that I couldn’t remain silent. The stress of moving away from home and taking difficult classes caused my OCD to grow rapidly, especially since I had never learned how to fight my OCD with exposure and response prevention (ERP). I was terrified of my dorm room catching fire, hoarded Post-it notes filled with nonsensical lists, and was unable to read because I would reread so many times, among other things. I started researching my specific fears and OCD again. I read a lot of blogs, probably including yours, and watched several documentaries. At that point, it seemed clear to me that I had OCD; it fit too well. That following summer I asked my mom if I could see a different psychologist and that professional easily diagnosed me with OCD.

I was so relieved to be diagnosed with OCD, but some people feel ashamed and embarrassed to have been “labeled” with a mental illness. How did you feel about your diagnosis?

I was definitely in the camp of feeling relieved. (I wrote this blog post about my thoughts just after I was diagnosed.) Because this was something I had been secretly struggling with for over a decade, learning it had a name, there was an effective treatment, and there were other people who understand felt incredible. Having the diagnosis certainly didn’t take away my OCD, but it did give me hope that I could get better and made me feel empowered to fight back. Maybe if I had been diagnosed when I was younger I would have felt differently, but a diagnosis was something I sought out as the first step to helping myself.

At first, I was shy about revealing my diagnosis, even to close friends. I don’t think it’s because I thought they would react badly, but because I didn’t know how to even start explaining it since I had done such a good job keeping it a secret. With practice, I have become more comfortable sharing my diagnosis and story. Today, I feel next to no shame about having a diagnosis of a mental illness. It truly is just an illness, probably caused by a mix of my genes and the environment I grew up in, so I don’t view it as different from any other illness.mental-health-monologues-2015

With a blog of your own as well as features on The Mighty, speaking events, and videos, at age 21 you’re already a recognized voice for individuals with OCD. How did you get into advocacy? Did you expect to be heard so quickly?

Oh gosh, that’s weird to hear someone as prominent as yourself call me a recognized voice for people with OCD. But to do my therapy homework for the week, which is practicing aligning how I see myself with how others see me as competent, thank you!

I started my blog shortly after I was diagnosed with OCD, and that was probably my first step into advocacy. Really it just started as a place to express myself after keeping all of these thoughts and fears secret for so long. I hoped other would read it, but I didn’t mind if I was just writing for myself. Gradually though, I became more interested in also using my writing for advocacy. I started sharing my blog more widely and looking into other places to publish essays or speak.

Around the same time I started my blog, I also got involved with mental health organizations on my campus. My first big involvement was speaking in our first ever Mental Health Monologues show about OCD. Since then, I have stayed involved with several mental health clubs on campus and now direct the Mental Health Monologues show. I love being able to write for different websites and reach individuals with OCD, or people who just want to learn more about the disorder, anywhere in the world. But there is something powerful about speaking and advocating in your own community, and meeting other advocates on campus.

One of your posts I really identified with — and I identify with a lot of them! — is Why it’s tricky to joke about OCD. Not to toot my own horn, but I have a great sense of humor. I love to laugh and to be goofy and I feel uncomfortable around overly serious people. But I cannot get on board with jokes made at the expense of OCD sufferers. What prompted you to write this particular post? Have you ever called someone out for making light of OCD, and if so, how did that go?

What prompted me to write this post was how many times I have heard or read people saying people with mental illnesses just need to take a joke and learn to laugh at themselves. The thing is, I do laugh at myself and about my experiences with mental illness. A lot. But the difference is underneath it all, I know just how serious and painful OCD and other mental illnesses truly are. Whereas, I don’t think most people joking about the disorder really grasp how bad it can be.

I think about this especially when I am in my worst moments with OCD. I am vastly better compared to when I was first diagnosed, but I still have OCD and there are still times when I get quite stuck. To go off on a tangent, the most recent example was this summer, when I came home from taking classes at my school’s biological station. I had gotten little sleep, taken an exam that morning, and then rode several hours home, all of which are the prefect recipe for OCD. When I got home, I learned a pipe had burst a few weeks ago and water had gotten in our basement. To keep my college stuff (which of course I kept in the basement) from getting damaged, my mom had to move it. For most people this might seem inconvenient or even a little stressful. But for someone with OCD, small things can be very big things.

I still have a massive fear of people touching my things and rearranging them, especially if things are placed in multiple rooms, rather than all together. I am irrationally terrified that something will get damaged or lost. When I got home and saw my stuff, I was completely flooded with anxiety and had a breakdown. I ended up curled in a ball on the floor in between piles of my stuff, sobbing for about three hours. Once I could move again, even though I was exhausted, I ended up staying up late carrying boxes around and reorganizing all my stuff. It’s hard to describe just how overwhelmed and stressed I was about this, and about things as simple as one pair of shoes being put in one room and another being put in the room next door.

I wish people who joke about OCD could see moments like this. Most of the time I am a normal-looking, high-functioning individual, but not when OCD is hitting hard. If they could see these moments and how serious and painful the disorder is, I don’t think they would ever joke about OCD again.

When I joke about the disorder, I’ve lived through these moments. I know they are the reality. I think it’s that knowledge of how bad something can be that makes it okay to joke about it. On a similar note, I’m not bothered when someone like my psychologist jokes about OCD. He treats countless patients a week and, again, knows how debilitating and painful the disorder can be. I know he knows this and empathizes with his patients, considering he is spending his whole life treating the disorder, so I can laugh and joke along with him in those contexts. It’s that underlying understanding of what OCD really is that make it okay to use humor to cope.

The other large reason why jokes about OCD bother me is the simple fact that it perpetuates myths about the disorder and increases the time it takes before individuals who actually have OCD get diagnosed and treatment. I like to hope that if society jokes about OCD less and instead has a better understanding of what the disorder really is, the gap between onset and diagnosis will decrease, which only increases someone’s prognosis of recovering.docc-conference

Did you have any hesitations about sharing your story before you started your blog? What has the response to your advocacy been like?

I definitely had some hesitations at the start, and originally used a pseudonym on my blog rather than my real name. My main concern was that when I go to apply to graduate schools, someone will see it and it will negatively influence their decision. At this point though, over two years into writing and speaking publicly about OCD, I’m pretty much an open book. That might be because responses have been overwhelmingly positive, from both friends and strangers. It especially makes it worth it if I see someone found my blog by searching their symptoms or tells me something I wrote helped them, just as others’ blogs helped me. I’m glad I can give back to others just figuring out their own OCD.

As for graduate schools, I’ve decided if a school doesn’t accept me because I speak openly about my mental illness, then that isn’t a school I want to attend anyway. I want a school that values and supports the mental health of their students, and a campus that has open conversations about mental health.

For me, writing and speaking at conferences about my OCD has been like ERP because (a) public speaking has always made me really nervous and (b) I hid my obsessions for years and years. Have you found your advocacy to be beneficial to your mental health?

For as shy as I am in person, it might seem weird that public speaking doesn’t make me uncomfortable. I think it’s like when I dance; I’m a completely different person when in front of an audience and “performing.” So yes, I do find writing and speaking about OCD beneficial to my mental health. It provides a great outlet for me to express things I might have otherwise kept to myself for another decade. Writing, in particular, tends to boost my mood and I always feel better after I write. One of many reasons why I have just declared a minor in writing!

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

If possible, find a good therapist who knows ERP. Expose as much as possible and make uncertainty your best friend!

Tuesday Q&A: Producers of UNSTUCK

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ocd_conToday I’m hosting Chris Baier and Kelly Anderson, the producers of the upcoming documentary UNSTUCK: An OCD Kids Movie as well as incredibly supportive parents to children with OCD. The kids interviewed for the film will inspire you: They’re articulate and honest, and their stories will help spread awareness about OCD, particularly how it affects children. Stay tuned for the film’s release next spring!

Chris, you have a 11-year-old daughter who has OCD, and Kelly, you have a 12-year-old daughter who has OCD. How did you realize your child might have OCD? Were there outward symptoms such as physical or time-consuming compulsions, or did your child approach you about obsessive thoughts, for example?

Chris: My wife and I realized something was wrong when in the span of a few weeks Vanessa changed from a happy-go-lucky kid to extremely anxious and scared. She was 8 at the time and became frightened of things like small pebbles and trees on our street. She was convinced these objects were poison, would cause cancer and kill her. She was panicked all the time so we knew she needed help, but we did not know it was OCD until we talked with a licensed therapist.

Kelly: My daughter is 12 and her OCD presented with some pretty visible and classic symptoms so I knew right away what it was. She is not in the film and I’m letting her figure out how much she wants to share about her OCD these days so I guess I’ll leave it at that! She is doing some drawings that will be animated for the film so she’s participating in that way.

OCD is such a commonly misunderstood disorder. What did you know about OCD before your child was diagnosed?

Chris: I knew about OCD and that it was serious, but I mostly associated it with being scared of germs or getting sick. I had no idea of the tangled web it weaves.

Kelly: I have one friend whose brother has severe OCD so I was somewhat aware, but that’s nothing like confronting a severe case of OCD in your own child or family.

Since you live in New York City, I imagine — and hope — that treatment resources abound. Was this the case, or did it take some trial and error before finding the help your child needed?

Chris: In NYC there are plenty of therapists who say they treat OCD, but not many do exposure and response prevention (ERP). My wife and I had to do a lot of research about the disorder and one of the reasons it took weeks to get my daughter the right therapy was because we had to interview many providers just to make sure they were trained in ERP. There were none in Brooklyn so we had to take Vanessa to lower Manhattan each week. About six months into her OCD therapy we found a free group program at Mt. Sinai Hospital. This program, led by Dr. Ariz Rojas, transformed our lives. However, it meant traveling one hour each way by subway to get our daughter to the nighttime sessions.

Kelly: My daughter was already seeing a therapist for some other issues, and that therapist confirmed that we were indeed dealing with OCD. We did ERP with her for a while, but eventually we decided to take advantage of a free group therapy clinic run by Dr. Ariz Rojas at Mt. Sinai Hospital here in NYC. Dr. Rojas specializes in OCD and her approach to ERP is very aggressive (I mean that in a good way!). We started seeing her privately as well as in the group, and it was tremendously effective in dealing with my daughter’s severe OCD. I would strongly recommend that parents of children with OCD seek out specialized ERP therapy if at all possible, even if it means traveling a distance for initial meetings and then continuing online.

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When one member of a family has OCD it can affect the entire family dynamic. What advice do you have for parents whose children have just been diagnosed, or for those who have been struggling to support their children for an extended period of time?

Chris: OCD totally hijacked our family and figured out ways to manipulate and dominate everyone. As a parent, your first thought is to soothe and accommodate, but that’s the worst thing you can do. My advice for parents is to immediately start educating yourself on what OCD is and how it’s treated. Learning about the disorder became our second job. We read books, joined Yahoo groups, watched videos, joined the IOCDF and talked to a lot of people. We needed to understand as much as we could. Eventually, we started a parent group in Brooklyn because we needed to talk to people who understood what we were going through.

Kelly: Learning how to be dispassionate when doing ERP homework with your child is very important. You need to get used to seeing your child in a lot of distress without losing your cool or over-identifying! I also learned that when I react to my child’s OCD with anxiety, it makes her OCD worse. It can be incredibly hard to stay calm and non-reactive, especially if they taking out their anger on you, but if you get upset it just makes everything worse. Finally, trying to be compassionate instead of getting angry at any OCD behavior is key. I found that a very important and difficult lesson to learn, but it’s made a world of difference.

You met at a support group Chris runs for parents of children with OCD. How did you go from that initial meeting to collaborating on UNSTUCK: An OCD Kids Movie?

Chris: Our kids both attended a weeklong OCD summer camp at Mr. Sinai Hospital. One day Kelly was driving her daughter and Vanessa home. The girls were talking about OCD in a very knowledgeable way and that sparked an idea. Kelly approached me about working together and I’m so happy she did. UNSTUCK is something that I think will help many parents and children.

Kelly: I make films as my profession, and last year I had just finished a big project and was thinking about what to do next. I realized I was spending all my time reading about OCD, and it was hard for me to focus on anything else because it was such a big part of my life! The biggest obstacle standing in the way of making a film about OCD was my discomfort with showing kids going through ERP — I knew from experience that no parent would want the world to see their child in such a vulnerable position, and that the kids wouldn’t feel good about it either. I saw another film, Ellen Bruno’s Split, about kids and divorce, and I really liked the way the kids just talked about their experiences in an interview format. I knew Chris through the support group, and had noticed that he was passionate about connecting families and kids with OCD, and we came up with this idea of “kids as experts on OCD.” It’s been great working together on UNSTUCK: An OCD Kids Movie.

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The children who appear in your film inspire me! It took me years after diagnosis in my late 20s to start talking about OCD, and I still get nervous. Were there any obstacles to finding children who were willing to open up, and parents who were okay with that, too?

Kelly: We are really indebted to several of our advisors who are mental health professionals — in particular Dr. Ariz Rojas at Mt. Sinai Hospital and Dr. Eric Storch at Rogers Hospital. They were willing to approach some families about participating in the film. We found other children through the OCD and Parenting Yahoo group. I am really very thankful to Vanessa and Jake, the first two children we filmed for the trailer. I think they inspired other kids to participate because they were brave and articulate, and potential participants could see how important it is for kids to hear from other kids who know what they are going through.

I think it speaks to a greater level of acceptance of difference in general, and of mental illness and disability in particular, that kids are willing to tell their stories. These kids really want to help others with OCD — it’s amazing to hear them talk about why they want to be in UNSTUCK.

You have an advisory board of professionals — adults — in the field. How much input have you gotten from children with OCD, and what’s been the most surprising, helpful, or enlightening piece of insight they’ve shared?

Chris: We talked with probably 15-20 children and families before picking our cast. Every child we spoke with help us frame our approach. These kids and others in the OCD community really helped inform the discussions we had during filming.

As for what surprised us, collectively two themes stand out. The first is the loneliness each child experienced when OCD was really bad. The second is the bravery each of them showed while learning to fight back. Some children have had to do some drastic things to get control of their lives. We’re in awe of their strength.

UNSTUCK seems like a real labor of love. How does it feel working on a project that’s so personal, and how have you managed to fit it into your schedule?

Chris: Schedule-wise, we set mini deadlines and I think that helped us stay on track even though we never had an official release date. First we wanted to get the trailer finished by winter 2016 so we could start fundraising and spread the word about the film. Then we planned a screening at OCD Con in July, which meant we had to film more children in order to have something to show at the conference. Now we’re focused on finishing by spring 2017 so that we can share it with the world.

Kelly: It’s definitely a labor of love! We also were really fortunate to get some funding from the Kellen Foundation for it, so that has been really helpful. It’s always a challenge to get films made but we are really excited it will be coming out this spring!

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What can my readers do to help make UNSTUCK a reality? 

Chris: It would be great if people joined our mailing list on our site and/or like our Facebook page. This way they get first look at new content and get notified immediately when UNSTUCK is finished.

Kelly: Well, we are still looking for donations. Every dollar will go toward getting the film finished and out into the world. We really want to do a big engagement campaign with it, showing it in festivals, conferences, community organizations, schools, and more.

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

Chris: I would say parents and caregivers should understand that they can’t magically fix a child. Kids have to learn the tools themselves. I found that the best thing was to become an advocate and cheerleader for my daughter. So, just find ways to help and support your child so they can focus on therapy.

Kelly: Don’t blame your kid for their OCD even though it makes life miserable for everybody. They are dealing with a tremendously stressful mental illness and they need your love and support. And forgive yourself for the times you act in ways you regret — we are all only human! Do whatever you can to get your child to a cognitive behavioral therapist that specialist in ERP for OCD (the International OCD Foundation website can help you find someone qualified). That really saved our lives.

Tuesday Q&A: Angie Alexander

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fullsizerenderWelcome, welcome to this week’s Tuesday Q&A! About a year ago I started to see today’s guest, Angie Alexander, comment with compassion and wisdom in some of the OCD support groups I belong to on Facebook, and then one weekend afternoon last spring we participated in a four-person video all about intrusive thoughts. Angie was so knowledgeable I assumed she’d been at this whole advocacy thing forever–imagine my surprise when I learned she’d been diagnosed just months before! She’d gone from years and years of confusion to a flash of clarity and right on to sharing her story with hundreds of fellow sufferers on Facebook. Folks, it took me years after diagnosis before I could talk about my intrusive thoughts, so Angie’s courage and the way she almost immediately payed everything forward floored me. And I don’t know how she finds the time. She has five kids!

We got to room together at the last conference–we’d never actually met in person and suddenly we were sharing a bed. “Great to finally meet you! All right, lights out. I’m sorry if I snuggle up to you in the middle of the night thinking you’re my husband.” She’s just as sweet and genuine in person as she is as moderator of several support groups on Facebook, including the first she started up, Friends With OCD. Let’s hear more from Angie–her answers are truly beautiful. I was touched to read them and I’m honored to share them with you, my dear readers.

Like so many other people with OCD, you had the disorder for years before you were diagnosed. What obsessions had you been struggling with the most, and how did you finally realize what you’d been going through might be OCD?

By far, the most intense and dominant themes in my experience were hypochondria (aka “health OCD”) and harm OCD. Health OCD was the most prominent throughout my journey, whereas harm OCD didn’t rear its head until after the birth of my first child. I suffered with feeling as though I would be diagnosed with other life-altering illnesses that my family or close friends had suffered from, and any fever or headache meant certain death. As a small child I begged for reassurance from my mother that little bumps I had found through careful exploration were not in fact cancer, and that the fevers or stiff necks I felt were not indeed meningitis. My loved ones always wrote off my illness and coined me as the more “sensitive child” and my acute fears were treated as more of an annoyance than a legitimate illness to be evaluated and treated.

After the birth of my first child, I was debilitated with anxiety. After being exposed to a news broadcast about a mother who had drowned her five children in a bathtub, I experienced harm thoughts night and day, and was terrified to be alone with my child. I turned to a few older women who were religious, and naturally accepted the belief that through enough prayer and bible memorization, my malady would resolve on its own. After all, it was certainly not the kind of thing you’d take medication for or spend money to fix. It was about self-discipline and having enough strength to brave your own mind. Or was it?

Fourteen years had passed, along with plenty of bible studies, prayers, and petitions to any available deity that could perhaps heal my broken spirit. Moreover, my seemingly broken mind. OCD ebbs and flows, as most of us who suffer from it have come to know. It receded and swelled throughout those sometimes excruciatingly long years, until finally after the birth of my fifth child, I could no longer go at it alone.

I knew that whomever I shared my story with had to be full of wisdom, and moreover compassion, in order to truly grasp the heart of the matter. But whose life is overflowing with this quality of person, right? Out of a sea of people over 14+ years, how do you set your mark on one sort of super human? I don’t know if it’s just where I’ve walked, but my life hasn’t necessarily been overflowing with a sensitive sort of people if you know what I mean. It’s not like you can just walk up to someone who you respect and admire, and moreover who you hope respects and appreciates you in return, and explain to them that you think you might be a danger to your children and that, just in case, you probably shouldn’t be left alone with them. Any time you open up to someone, it’s always a gamble. You’re sharing pieces of yourself, like in a game of chess or something. You’re moving your pieces around, and you’re hoping it’s allowed and you’re hoping you’ll survive, and when someone takes a piece that you’ve exposed, they just play fair. That’s all any of us really wants, I think. Well I gambled, and I chose to expose my most vulnerable pieces in an attempt to survive. In nothing more than desperation and only about an ounce of deliberation, I opened up to a trusted friend. Out of anyone I could have dumped my problems on, this was the only one who made sense. I’m so glad for it too, because she totally got it. She even shared similar experiences, and what’s more, directly sought treatment for me with me. She introduced me to a term that really set my soul free: Intrusive thoughts. Such music to my ears! We found a specialist who specialized in treating people with intrusive thoughts and after three appointments with her, and lots of digging into my past (I’m a fast talker!) I discovered she wasn’t getting to the real issues.

I took to Google because sometimes being your only advocate is all that’s between you and recovery, and I uncovered the term obsessive-compulsive disorder. It was like my identity was unearthed, and something woke up inside of me. I suppose it was hope. For the first time in over 14 years I felt deeply known and understood. Granted, it was only Google rocking my world at this point, but mercy. It was only going to get better.

You were diagnosed just a year ago, and in that short time you’ve become an awareness force to be reckoned with. How did you go so quickly from diagnosis to using your story to help others?

From that first moment there in my dining room, where the seat that I was sitting on was warm from hours of searching, a fire was kindled inside of me, Alison. It was like I was validated in all the suffering I had quietly endured. It was like someone who couldn’t hear was being given the ability to listen to a symphony for the first time. Like a person who was mute was given the opportunity to speak again, or for the very first time too. Without sounding too dramatic here, it was like I was in exile, and I was coming home again. After being quiet for so long, there was no other choice but to speak out. I just had to do something. Telling people how set free I was seemed like the most authentic option, and that’s how I was determined to live: Authentically.img_7998

Since you’re a mom yourself, in the beginning you focused a lot on reaching out to other mothers with OCD. Would you say many of these women have obsessions about their children, or do you find yourself offering support for navigating the daily realities of both OCD and motherhood?

I would say that over 75 percent of the mommies I’ve reached out to and who have reached out to me have struggled with obsessions surrounding their children in some fashion or form, although I don’t think you have to be a parent to obsess about children. I think having children is just another aspect of our life that OCD can manipulate. In many ways, being a mother saved me, as it has many others. When you’re obsessing about co-workers or friends or extended family members, oftentimes it’s easy to remove yourself and engage in avoidant behavior. This is not easily done in the case of a parent or primary caregiver. Somewhere along the lines between when you wake up and when you go to bed, whether you stay at home or whether you have a career, you are responsible for this little human being and that takes personal touch and time, and consequently inevitable exposure. Children are not easy to escape or to avoid, especially if they like you.

In most cases, especially after a mommy has gone through treatment and entered into a season of recovery, OCD manifests itself differently and unsuspectingly. For example, we’ve just returned from a night of trick or treating this evening. As I write this, I’m currently in my room editing some of the responses for this fabulous blog. In the back of my mind I feel an almost overwhelming desire to go check my children’s candy. Seeing as how I like to fall on the side of laziness from time to time, I’d just as soon throw the whole kit and caboodle out than go searching every candy wrapper for a razor blade or drug paraphernalia. But even something so basic as this little “problem” that my brain feels urged to “solve” can become an insipid recipe for OCD to reach back into even a small piece of my life again. Other moms search candy. Other non-sufferers caution about checking the candy for any curious-looking wrappers or discoloration… So I find myself sharing a lot just about the basics, because OCD can seep in most indirectly, and often we just need another set of eyes to help navigate through the less than obvious life happenings sometimes. Which leads to the next question!

You run a couple of different types of support groups on Facebook. Can you explain the difference between secret and closed?

So I started a closed group called Friends With OCD back in December 2015, a month after I was officially diagnosed. This group was created so sufferers could come together and share more about their life and their families and their trials that often overlapped with OCD, but not always. I felt it was important to preserve the integrity of intimacy that we as sufferers often crave, so I decided to make the group “private,” which just means that the group can be searched for and found in a search engine, and depending upon your settings, people can see that you are in the group, but unless someone is a member of the group themselves, they cannot see what members post. After meeting the most genuine and authentic people on the planet through this outreach, I saw a need for theme-based groups. This just means that people with, for example, POCD, or HOCD, or harm OCD usually just want to find others with their same obsessions so they can reassure… ahem… I mean support one another as they seek proper treatment to overcome their illness. So I created “secret” subgroups that are sort of like the sibling groups to Friends With OCD.

Creating a “secret” group can be much more challenging and require much more care and attention because with this kind of group, it cannot be found via a search engine, even with the most detailed searching. Sufferers discover these sorts of groups through word of mouth only. They have to be friends with someone on Facebook in order to be accepted and added into the group. With either group, however, I am the only moderator who “adds members” and am very cautious in doing so. To be added to the “secret” groups you must currently have, or have had in the past, the theme the group illuminates. In regards to Friends With OCD, you must have OCD, or have a child or close relative who has OCD. I do my very best to ensure that we share in a relatively safe and supportive environment and that the gold standard in treating OCD is upheld and that reassurance and other compulsive behavior is moderated and discouraged. Compulsive behavior is allowed, however, and even welcome, as we are all at different places in our lives and grow at different paces. Above knowing the “right” stuff, it’s more important to feel cared for and accepted for who you are. When we feel free to lay our burdens at each other’s feet and can in turn be confident that we will be cared for in our vulnerability, that’s where real healing and true recovery is cultivated. At least that’s what I think.

What can members expect if they join one of your communities?

Acceptance and genuine support from fellow sufferers who have been where they are or are headed where they are going. The biggest complaint I receive from people who become members of any of the groups I moderate is one main thing: Sufferers are triggered by other sufferers. With any sort of exposure, this is of course a sort of inevitability. But just as I did when I first sought help for my illness, I weighed the cost. Is finding peer support and holding hands with others who totally and completely get you valuable enough to you to risk being triggered every so often? Being triggered is something that I use in my own life to remind me of my frailty and to keep me humble on this road to helping others. Triggers can be scary and overwhelming and can set us back a few steps from where we want to be. Accepting where you are, whereever you are, with whatever you feel, can help you in the journey we are on in online support groups. Triggers don’t keep us safe. They keep us ignorant of how sick we are, and how truly strong we can be.

You don’t live in a city. In fact, you live on a farm with dogs, cats, chickens, and even a resident snake! Was it hard finding a treatment provider? Do you have any advice for people who may not live anywhere near an OCD specialist?

We moved from Detroit, Michigan, to the quiet hills of Tennessee, and it has been rather isolating in a lot of ways. We do have no shortage of pets to keep us company, though, that’s the truth. We name all our animals after herbs, but our snake’s name is Hank. Not sure what happened there. But little by little we are learning out here in the middle of nowhere that everything in our life is able to serve a purpose if we make room for it and examine its potential in our experience. Because we live so far from civilization, the closest “real” city is a little over an hour away. When I sought an OCD specialist, I found a few in that city, so I was able to obtain care a lot closer than many of the sufferers I rub shoulders with.

Finding effective treatment is, in my humble opinion, the #1 problem right now in the OCD community abroad. In every country, really. I talk with people from the UK, Africa, Australia, China, Russia, Canada…we all are crying out for better treatment options. If a sufferer cannot find treatment in their area and none are available via teletherapy, the next best thing is self-help books. I only had three months of formal therapy with an OCD specialist and have learned the rest of what I know and practice through self-help books. I do believe that we are often called to be our own advocate, especially in the season in which we live. No matter what the situation is though, there is always reason to hope.

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

If I could just share one piece of advice with someone who is currently in the throes of OCD, or who is worrying about perhaps being in its grip again, I would say this: Wild acceptance.

No matter where you are on this road we are walking together, and no matter what thoughts you’re struggling with and no matter what seems insurmountable to you today, tomorrow, or yesterday… Acceptance is the key that unlocks every obsession. If you live trying to avoid anxiety and discomfort, you’ll never reach beyond yourself and your obsessions and get to live the life you truly deserve.

Some people ask me, “What is acceptance?” “What does that look like?” “How does a person live that out in the midst of a debilitating truth your mind is accusing you of?”

When I was a little girl my mama used to take me to a little place called “the gravel pit” in Michigan. Sounds majestic, right? It was not really large enough to be a lake, but bigger than a pond, and it was full of fish and fun in the warm summer months. I remember all those days we spent out there really well, but my fondest memory was the time my mom took in teaching me how to float. You know, where your body just lays limp on the surface of the water and both sky and sea feel like one substance. Okay, okay. It was a pond on steroids and not a sea, and my limp body wasn’t limp long because my brother was obsessed with cannonballs. He may have liked to see me squirm back to the surface too, after almost drowning from those mammoth waves that he somehow executed with precision. Every. Single. Time. They swept over my fragile body and debilitating fear ensued, along with my mother coming unhinged at that hooligan of a preteen.

Anyway. My mama used to hold my 60ish-pound body up to the top of the surface of the water. (That’s support groups.) As she spoke in such a Mr. Rogers tone, I was lulled to trust. I’m sure it was her confidence in me. She told me what I could do, and that little girl in me trusted that I could. With much trepidation still, of course. She started me out in the shallow end, where I knew my feet would land if I decided to give up too soon. But gradually she took me out to deeper and deeper waters, all the while building my trust in her. Before long I was floating all by myself, and before too much longer, I could float on even the sloppiest of waves from my growing (in annoyance and size) big brother.

The most valuable lessons that I carry with me today were the ones I learned out there on the surface of that water. When I let go of all the control. Where I relinquished (almost) every ounce of fear. When I laid there, unsure of whether I would live or die sometimes, and just surrendered it all on the water. My mom would see an elbow drop below the surface… or my lower regions. There was no saving that section though. But any time my mom would notice that I began to try and take on the water in my own strength with my own willpower, she would gently whisper, “Just close your eyes and let go.”

Acceptance for me is in the letting go of every aspect of my life. I know, it feels like letting go is so scary. Everything sensible in you is screaming, “RECKLESS! IRRESPONSIBLE!” Maybe it is a little bit of those things. But if I’ve learned anything, it’s that I have to abandon the life I thought I needed or wanted in order to live the life I truly deserve.

So in the words of Bruce Lee: “Be like water, my friend.”

Tuesday Q&A: The Secret Illness

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secretillnessiiThe Secret Illness is a beautiful, illuminating art project that spreads awareness of OCD to those who don’t understand what it really is and helps those who understand it all too well feel less alone. It gives sufferers an outlet for sharing their stories without fear of stigma, because their faces are pixelated and they can decide how comfortable they feel about sharing details such as their name and location. I did one myself, and I had them use my first name and my state, but others are completely anonymous, leaving off their names as well as geographic details. Let’s learn more from the project’s founders, Becca Laidler and Liz Smith!

Do you have OCD yourself?

Becca: My mother has lived with OCD since she was young although she was not diagnosed until much later into adult life. Growing up with her routines and rituals has made me very aware of my own mental health. I do not feel like I live with OCD on a day-to-day basis, but when small rituals do find their way in during stressful periods I find it quite panic-inducing as I have seen the effect on my mum when they get out of control. I have written my own blog post on The Secret Illness wall about my relationship with OCD.

What inspired you to create the Secret Illness, and how did you make it a reality?

Becca: I feel that if my mum had been diagnosed at a younger age she would have had a much more enjoyable and happier life. Even now after diagnosis she feels embarrassed talking about how OCD affects her day-to-day life. We wanted to create a safe place where people could speak their fears without being judged and create a catalog of varying experiences so that people can see they are not alone. We are extremely lucky to have some great collaborators and volunteers who help us make this a reality.

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Becca Laidler

Liz: Becca! When Becca told me about her mum’s experience I realized I had no clue about what OCD was and I wanted to explore it more. Then soon after I had an amazing conversation with someone I met quite randomly on a plane trip to New York who was diagnosed with OCD, and that just increased my interest further …we’re still in touch to this day.

Are you surprised by the response you’ve gotten to your call for submissions? 

Becca: We were blown away at the response from the OCD community. I never imagined we would get as many posts as we have and from all over the world. We have also been sent so many poems, paintings, music, and other creative works based on OCD. The work is of such a high standard and breathtakingly honest.

Liz: I had no idea what to expect, but the response went way beyond anything I had imagined both in terms of the number of the responses and the quality of the responses.

Your beautiful project is fostering understanding and breaking down stigma about OCD. What do you think is the most harmful misunderstanding about the disorder?

Becca: Most people think they know what OCD is already ,which means misunderstandings have to be broken down first before people can accept the true debilitating nature of this illness. When people use OCD as a positive adjective for being neat and tidy it can be very demoralizing to those suffering in silence.

Liz: Same answer as Becca: the fact that people think they already know what it is, so when they come across it in reality it gets left undiagnosed because they don’t recognize it as the OCD they think they know about already.

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How can my readers get involved with the Secret Illness?

Becca: We welcome new wall posts from anyone with a relationship to OCD. These can be as long or short and as anonymous as you like. You can email them to wall@thesecretillness.com. We also welcome any creative works relating to OCD and any creative individuals who may want to volunteer to help us achieve our films and installations.

Liz: In addition to what Becca has already said, we’d like to hear from people as to what topics they’d like us to cover in the podcast series or perhaps they would be up for being interviewed for the podcast. We’re also always on the lookout for creative industry professionals to get involved, so for example Mitch Grussing, who lives with OCD himself, is a composer by trade and he volunteered to compose the music for the podcast (and didn’t he do a wonderful job!). Are there any illustrators, designers, animators, video editors, sound designers/editors out there who are living with OCD who would like to collaborate and help us turn some of the wonderful poems and monologues we’ve been sent into short films? We’re also interested in talking with people involved in theater and I’m on the lookout for someone who has experience of creating physical art installations.

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

Becca: You are not alone. The more you speak about how you are feeling and what you are going through the easier it is for you to receive the support or treatment you need. Many people never speak their intrusive thoughts out loud as they fear they will be judged as crazy or dangerous, but this is what OCD wants. Have a look at some of the accounts on The Wall and you will see how many people thought they were the only one feeling this way.

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.