Monthly Archives: September 2016

Tuesday Q&A: David Adam

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This Tuesday we’re hearing from David Adam, author of The Man Who Couldn’t Stop, 2015 recipient of the International OCD Foundation’s Illumination Award, and 2016 OCD Conference keynote speaker.

I’ve had several different themes of obsessions, and many people I know who have OCD do, too. David struggled with just one, a fear that he’d contract HIV/AIDS, and maybe you do, too. It’s another reminder that OCD is crafty and takes on many forms, but no matter what forms it does take, it’s treatable.

Your keynote at the OCD Conference was titled “The Accidental Advocate”—you said you never expected your book would lead to speaking at schools and answering emails from others with OCD. What was your purpose behind writing the book?

To tell what I thought was a great story. The more I researched and read about OCD and the science and the history, the more I got the sense that there was something in it that people would want to read. And then the journalist in me kicked in and said that I wanted to write it all down before someone else did!

The Man Who Couldn’t Stop was a little different from other first-person narratives in that it included an in-depth account of the history and science behind OCD. Why did you want to write about OCD in this way?

That was the stuff that I was most interested in. The personal narrative stuff almost came later in the writing, as a way to stitch all the material together and to provide a narrative structure. Books, I have learned, are all about narrative structure!

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Writing and speaking about your OCD helps people with OCD feel less alone, particularly those who relate to your AIDS-related obsessions. Has being open about it helped you as well? 

Yes, it’s helped with the indirect harm that was caused by previously keeping it (or anything that central to someone’s life) secret. But it hasn’t helped with the actual symptoms of the OCD, and why would it? If only it were that simple.

During your keynote address, you mentioned that while many people have told you you’re brave for sharing your story, you think young people taking on advocacy are the truly brave ones. Why did you say that?

Because to an extent I have little to lose. I am in my 40s, have a wife and children and a job. I think it’s brave to confront a situation like OCD head-on when you know that it could follow you around—when one goes for the job, for instance. And because it takes guts to do so rather than try to pretend it wasn’t as serious as it was, which I did as an excuse not to get help.

Although you didn’t mean to become an advocate yourself, do you have any advice for my readers who want to get into advocacy themselves?

One reason I was hesitant is simply because there are plenty of organizations who do it so well, and who would welcome help I am sure—just Google your local OCD charity or help group!

OCD kept its grip on you for many years, but it wasn’t until after you became a father that you became serious about addressing your obsessions and compulsions head-on. Can you tell us more about that?

I simply didn’t want to do anything that would make my daughter (at the time, now a son also) more likely to follow me and to develop OCD. And after I started to involved my daughter in my own OCD thoughts and rituals, then that was the push I needed.

What do you consider the biggest misconception about OCD?

That’s it’s about behavior. It’s a pathology of thought. And that is what makes it so difficult.

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

Tell someone, a friend or family member. And then realize it’s a medical problem that probably won’t go away without medical help.

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Tuesday Q&A: Stuart Ralph

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

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

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

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

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

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

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

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

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

Have any of the stories especially resonated with you? 

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

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

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

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

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

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

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

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

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

Tuesday Q&A: Stephen Smith

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steveheadshotOne of the best things about being an advocate for OCD awareness is connecting with other people who have OCD and hearing their stories, especially when they’ve decided to turn their pain into something positive by helping others.

In this Q&A, I get to learn about something I know very little about: The invention of an app! It was only a couple of years ago that people teased me about my phone, saying things like, “Your phone has buttons!” That’s why I’m so excited to host Stephen Smith, who created nOCD, an OCD therapy app for people who may not have easy access to treatment, maybe because they live in a remote area or they can’t afford to regularly see a therapist. I’m also excited because I didn’t follow a traditional treatment plan myself, and I understand how difficult it can be to find the right treatment provider. Stephen set out to tear down barriers to effective treatment—and from here I’ll let him explain why, and how.

First things first: Like most of my Q&A guests, you have OCD. How long did you experience symptoms before you were diagnosed? And what made you realize that you may have the disorder?

In retrospect, I remember experiencing OCD symptoms in high school. I always feared that I would suddenly get cancer, sometimes to the point where I would make my family take me to the hospital. However, I didn’t realize my symptoms were OCD-related until after my sophomore year of college. I started having very intense, uncharacteristic intrusive thoughts (with mental compulsions), different from the cancer-related ones I experienced before, so I knew something wasn’t right. After a certain point, the thoughts became so extreme that I knew I probably needed to find help. Unfortunately, due to the lack of awareness for OCD and OCD treatment, it took me five different tries to find someone who specialized in OCD. Before I found an OCD specialist, I had one clinician regularly tell me to snap a rubber band on my wrist after every intrusive thought. Another advised me to move away from my family, since they believed my childhood was the root of the problem (bad advice for treating OCD).

How did you feel about the diagnosis, and how did you go about treating your OCD?

I felt very relieved about my diagnosis, because it provided me with much needed hope. Before being diagnosed, I constantly felt depressed and anxious, thinking to myself “What have I become?” When I learned about OCD treatment, I read that other people were going through the exact same thing, and most importantly, many of them got much better.

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Why did you create the nOCD app?

I created nOCD in light of the problems I faced: (1) finding treatment and (2) going through treatment. Like I mentioned before, it took me five tries to actually find a clinician who was well versed and experienced in clinically effective OCD treatment—exposure and response prevention (ERP) and mindfulness-based therapy. That’s why the app incorporates both ERP and mindfulness-based therapy.

Tell us how the app works.

nOCD can help patients mindfully respond to a sudden OCD episode (instead of performing a compulsion) and stick to a structured ERP plan. In the background during use, the app collects objective, real-time data, which can be easily shared with a therapist, family member, etc. The data can then help OCD patients easily explain the details surrounding the war going on inside their head in a non-verbal way, and remember the events that occurred during the week. Lastly, with the new version of nOCD being released in a couple of weeks, patients can engage in auto-generated ERP exercises that naturally will take them through their hierarchies. For instance, during each exercise, users can create in app loop tapes, scripts, drawings, etc. Their therapist can even customize their different exposures for them.

I grew up in a relatively small town and wasn’t diagnosed with OCD until I was in my late 20s and living in Minneapolis. If I still lived in my hometown, I’m sure I’d have to travel to see a therapist. Was this a factor you considered when developing the app? What else went into the decision? 

I was very fortunate that I didn’t have to drive very far to see an OCD specialist. If I did, I can guarantee you that I wouldn’t be able to seek treatment due to the combined cost of travel and therapy. At the time, I was barely able to even pay for the local OCD specialist. Each week, I had to work overtime as a trainer/custodian at a San Antonio (Texas) boxing gym, since each therapy session cost me $195. Many who aren’t familiar with OCD treatment may ask: Why was the cost so expensive? The answer: the only OCD specialist in my area was “out of network.” Because these specialists are in such high demand (given the cruel nature of OCD), many can afford to charge whatever price they fancy. It’s another problem in OCD therapy that must be solved, and I am confident technology will eventually solve it. Although nOCD currently has many tools that improves the connection between remote patients and their OCD therapist, we still are innovating keeping both virtual reality and teletherapy in mind.

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Since you’ve launched this business and there have been press releases about it, I assume pretty much everyone in your life knows you have OCD. Was that always the case? Did you feel comfortable telling friends and family about the disorder?

Before I launched nOCD, only a handful of people knew that I have obsessive-compulsive disorder. Now that many know about my journey through treatment, a countless number of people have approached me looking for help. I admire their courage, considering how difficult it is to talk about both OCD-related thoughts and actions. When I was going through treatment, I remember only telling a select number of my family and friends, because I didn’t want my reputation to change amongst the rest of the social circle. Being an NCAA athlete, I’m living proof that mental illness doesn’t discriminate, just like other chronic illnesses. I don’t fit the stereotypical mold of someone who struggles with mental illness that is commonly (and oftentimes subtly) pictured by our media, but really no one does, since mental illness affects all types of people.

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

If you have OCD, you must know that so many people in the OCD community improve each day. OCD is the farthest thing from a death sentence, and in fact, the skills that you’ll acquire in ERP will make you more resilient than ever before. For example, before I severely struggled with OCD, I would always get incredibly nervous before playing football games, giving speeches, and meeting new people. After going through ERP successfully, I am now rarely phased by any of these three things. I now feel as if no challenge is too great!

Tuesday Q&A: Kat Hashway

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Welcome to Tuesday Q&A, dear readers!

Last month at the OCD Conference in Chicago, I ran into a family from my home state, a mother and her daughter who has OCD. As her mom and I chatted, this 9-year-old girl grew antsy—her mom gave me a look and said, “She saw a YouTube vlogger earlier, and we’re trying to track her down.”

That celebrity vlogger was Kat! She’s spreading awareness on her channel, ShalomAleichem {Mental Health Vlogs}, and gaining fans as she does it. It’s so important for kids and teens to see people their age have OCD, too, and are okay talking about it.

You’re 19 years old, and although I hesitate to say you’re lucky to already know you have OCD, it’s really common for people to go years, even decades, before they’re diagnosed. When did you first start experiencing OCD symptoms?

So, I was an anxious child for as long as I can remember, but I didn’t experience severe OCD symptoms until I was 15. Before then, my anxiety symptoms were more like generalized anxiety disorder (GAD). Although, after being diagnosed with OCD, I can look back and see many symptoms that were classic OCD symptoms. I understand why you wouldn’t want to say I’m “lucky to know” I have OCD, but I do feel incredibly lucky that I found out I had OCD and got treatment so fast. At the time, I had no idea how long it took most people to get a diagnosis and treatment. To me, one month for a diagnosis and six months for treatment was way too long. It was long enough to make a significant impact on my life, so I guess that’s why.

How long after the onset of symptoms were you diagnosed? Was it fairly obvious to your parents that something was going on?

I started experiencing severe harm OCD around August 2012. I knew something was wrong because I never experienced anything like those thoughts before! However, my parents didn’t know anything was wrong at first. Eventually my distress became known to them because I would get so upset every time I got an intrusive thought. I used to cry and tell my mom I didn’t want to live if it meant having these thoughts. They knew something was seriously wrong, but they didn’t know what. There was no way I would have told them the content of the thoughts either.

When I first started experiencing severe OCD symptoms, I had a therapist for depression and anxiety, but I was terrified to tell her about these thoughts. I really thought I was crazy, or schizophrenic. I never once thought it could have been OCD. After a month of severe symptoms, I realized I couldn’t go on like this and decided to tell my therapist about what I was experiencing. She didn’t know what it was either. Long story short, I ended up inpatient in a mental hospital and that’s where I was diagnosed with OCD (and I’m so thankful for that!). After discharge from the hospital, I saw someone who claimed to be a CBT therapist, who turned out to not be a CBT therapist and didn’t know how to treat OCD. It took six months for me to get into proper CBT with exposure and response prevention, in the form of an OCD intensive outpatient program at the hospital I had been inpatient at. That’s when things started turning around.

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You’re already so active in spreading awareness about OCD, with your own YouTube channel, ShalomAleichem {Mental Health Vlogs}. How did you decide you wanted to help others in this way?

Having to wait six months for treatment and experiencing the lack of knowledge on OCD by professionals was what first made me want to raise awareness. When I learned it can often take decades to find treatment, I wanted to help even more. No one deserves to have decades of hiding with this illness! I also recalled going online to see if anyone else had symptoms like I did and hardly finding anything. (Although, that’s probably when I found you! Yay!) Much of what I did find gave bad advice on how to treat the thoughts. After the end of my stay in the intensive outpatient program, I was very comfortable with practicing ERP. I knew the key to getting rid of the thoughts. So when I went online for support a year later, I thought, “Wouldn’t it be great to have a video blogger who made ‘classic vlogging style’ videos, with content that supported recovery from OCD? Something that would appeal to people like the kids and adolescents who I met in the program?” Then I realized, hey, I could do that! By that point I did find a few vloggers and bloggers who spoke about lesser-known types of OCD, but it seemed most didn’t appeal to young people, and many of those that did appeal to young people were still giving bad advice (by “bad advice” I mean using avoidance, distraction, and accommodating compulsions).

But that’s not all. You also have a blog called Do An Exposure! As someone who’s shared personal details of my own journey with OCD—and usually tearfully—I imagine that just doing your vlog and blog feel like exposures sometime. Has sharing your story helped you on your path to recovery?

Short answer, yes. It totally has. When I couldn’t tell my intrusive thoughts to my therapists, I was able to say them to strangers online. It served as a great exposure opportunity. There were times where I was very uncomfortable, but I did it anyway because I knew that others who had those symptoms needed to hear it. I wanted to be what I was looking for when I was first diagnosed. Maybe I would have been diagnosed and got treatment sooner if I had known I was dealing with a treatable illness, I wasn’t just going “crazy.” Now I feel so much more comfortable talking about my thoughts in all situations—depending on the circumstances, of course.

Any advice for someone who wants to share their story, whether through YouTube videos, a blog, or another medium?

I’m having trouble thinking of anything besides just do it. The more we talk about the taboo topics, not just of taboo obsessions but OCD in general, the more we break the stigma around mental illness. The more we break stigma, the more people who need help get help. The more people who need support get support. And the more people who don’t understand, get a chance to understand what life is really like for people who have mental illness and OCD. It’s honestly life changing to hear people tell you because of you, they have hope or feel less alone. Advocating has probably had more of an impact on me than it’s had on other people. If you’re scared to do it for someone else, do it for you. As a chance to expose or track your recovery progress. I’m convinced that when anyone shares their story, it helps people.

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So you’ve put yourself out there and have lots of adoring fans. Have you sat down in more intimate settings with friends and family to talk about your OCD? How did you tell loved ones about what was going on?

It’s funny because I don’t see myself as having adoring fans. But at OCD events, I usually have a few people who come up to me and say hi. The little girl was probably the cutest experience I’ve had yet!

I’m very guilty of avoiding vulnerability, which is shocking, I know. But because of that, I usually don’t talk about the specifics of my OCD in person unless someone is curious. The moment I sort of “came out” to my real life friends and family about having OCD happened on Facebook. It was after I went to my OCD program’s reunion and felt inspired by the recovery of my fellow patients. So I posted my story, disguised as an inspirational message to cover the vulnerability, and I got only positive responses. That’s the thing about confiding in people, we usually anticipate it to be worse than it actually is.

Let’s face it, all OCD symptoms are pretty terrible. But are there any in particular that you’ve had an especially hard time with?

The symptoms I had the hardest time with were the ones that brought my faith and morals into the mix. I don’t count harm thoughts because they morphed into scrupulosity shortly after my diagnosis. However, the Scrupulosity was a huge issue and barrier to treatment. OCD was so intertwined in my faith that I couldn’t tell the voice of God from the voice of OCD, and that was terrifying. It also led to me doing every compulsion because how could I say no to “God”? It really debilitated me to the point where I was essentially homebound before I went to the the OCD program. Eventually though, once I was able to separate my OCD from my God and treat OCD as an illness and not a spiritual problem, I was able to get better.

The second one that has given me a very hard time is the sexual obsessions. They have mostly mental compulsions and are almost a spin-off of the harm obsessions. They both have the same pattern of focusing on a few people and avoidance being the main ritual. With sexual obsessions, it’s taken a lot of exposure and response prevention to get to this point. Before I couldn’t talk about them and every trigger caused extreme anxiety. Now, most days the thoughts come in as just an annoyance. However, I’m still doing exposures for this and have some cognitive distortions to work through. Just ask my therapist! The amount of times she’s had to tell me “thoughts are just thoughts” is ridiculous.

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You’re pretty open about how important your faith is to you. How does it factor into your journey with OCD?

My faith has been something solid in my life since I first struggled with depression at age 12. OCD was definitely a challenge to it since OCD got so intertwined into my faith. However, I can’t help but see it as proof everything happens for a reason. Going through OCD feels like going through Hell, but it’s brought me to a time in my life where I’m truly happy. I believe God wants us to be brave. And through therapy I learned how to be brave in the midst of fear, when anxiety has inhibited me most of my life before now. Because of my struggle, I learned a lot about my faith and about myself. Before OCD, I would have been content with faulty theology that helped my OCD grow, now I know better. It may sound really silly and that’s okay, but I think God was guiding me through it all.

Your Weird Thoughts Thursday on Twitter is such a great idea—any weird thoughts that have really stood out to you?

I think my favorite thought I’ve heard was from last Thursday, “If I post my #WeirdThoughtsThursday, it will come true!” Seeing that people are using Weird Thoughts Thursday as an exposure as well as support makes me so happy! On the support side, I think my favorite part of Weird Thoughts Thursday is when someone says a “weird” OCD thought and everyone replies saying, “I’ve had that too!”

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

My biggest advice to someone who has OCD would be, don’t wait to get help because you’re afraid. Generally speaking, the sooner you get help, the easier it is to recover. I know it’s hard, but it’s so worth it! Don’t let anxiety tell you what to do, anxiety is just a big bully. And how do you get rid of bullies? Ignore them! Don’t play into their game. And, you know, get help from authorities or therapists.