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Tuesday Q&A: Justin

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Happy Tuesday! If you’ve been reading this series for a while, you won’t be surprised by how I met today’s guest, Justin: At the OCD conference! This past summer I presented about the shame and guilt caused by taboo intrusive thoughts, and Justin was in the front row. We chatted afterward, and he said he wanted to share his personal experience with obsessive-compulsive disorder (OCD). And here we are!

When were you diagnosed with OCD, and how did you know where to turn for help? 

I was diagnosed at age 26, but I can probably trace symptoms back to age 6 or 7. That’s about 20 years of silently struggling. Unfortunately my story isn’t uncommon, as you typically see statistics anywhere from 9 to 17 years from onset of symptoms to appropriate diagnosis.

Because I fused with my thoughts so intensely, I just thought okay, this is how life is, how I am. Life always felt off and full of struggle, but I didn’t know there was something fundamentally wrong with how my brain processed external information. Needless to say, an official diagnosis was accompanied by much relief (along with confusion, anxiety, excitement, and an eclectic mixture of other emotions).

My parents do not have a keen awareness of mental health issues, and never thought anything was wrong. In their defense, I concealed much of my turmoil internally due to shame and in an effort to appear perfect to the world. There was one period of my adolescence when I started to demonstrate violent physical compulsions related to obsessions of mine, but we didn’t know what it was. My mom finally agreed to take me to a local therapist who did a lot of talk therapy with me, tested me for attention-deficit/hyperactivity disorder (ADHD)—test results came back negative, but I guess we stopped there—and referred me to a psychiatrist who gave me medication and hypnosis. The combination of treatment “worked” in the sense that my physical compulsions stopped—but little did I know all they did was morph into mental compulsions. Because I was unaware that what I was doing in my head was exacerbating my condition, the disorder continued to dominate and ultimately snowball out of control.

I continued to seek out different therapists along my journey. Unfortunately, all missed the diagnosis. We did a ton of talking and analyzing, which I now understand only made things worse. What we needed to do was less talking and more exposure. All of the analyzing only kept me in a compulsive rumination cycle.

Oddly enough, along the way I would develop small periods where I’d do research and think to myself that maybe I have obsessive-compulsive disorder (OCD). Unfortunately, the nature of the disorder is such that I even doubted I had OCD because I didn’t have the “classic” OCD symptoms portrayed in the media. So I never truly pursued recovery. I was always in school and continued to pour my energy and time into that and other interests of mine. They all became compulsive—I became a compulsive student, compulsive bodybuilder, compulsive friend, compulsive man of productivity, compulsive “busy” person.

I poured into worldly activities to distract my mind from incessant strife. In reality, everything acted as a bandage to help me get through the years. If I could go back, of course I would stop school for a year and get the help I needed so I could live more effectively, but this is how it was supposed to be for reasons I’ll probably never understand. I’m grateful for entering recovery when I did, and am committed to a life of management from here on out.

It’s nothing short of tragic that the public is so misinformed about this condition and how it manifests. It is up to us now who have struggled to speak out vulnerably, spread awareness, and encourage people that they are not alone in their suffering. This is the pathway to earlier recovery for others.

What symptoms did you experience?

As mentioned prior, when I was younger I experienced a myriad of physical compulsions:

  • violent head shaking to “cancel out” bad thoughts
  • shoe tapping and clothing pulling to get things to feel “just right”
  • adding “I think” or “almost” to everything I said, because I wasn’t 100 percent certain what I was saying was true
  • arranging everything “just so” to avoid causing a fire
  • yelling “that’s terrible” anytime I heard or thought of something bad, or else God would think I wanted it to happen and would make it happen (since I’m that important that the world revolves around my ability to make things happen or prevent them from happening, right?)
  • speech repetition as if others didn’t hear, or to clarify what I originally said
  • various hand motions and facial contortions to get the “just right” feeling

The bulk of my compulsions presented/continue to present in the mental realm:

  • rumination
  • neutralization, or canceling out bad thoughts in my head
  • avoidance (relationships, scary situations, commitment…because if I commit, it’s real and I have to face people who may not agree!)
  • overpreparation
  • mental preview
  • projection
  • catastrophizing
  • magical thinking
  • checking—so much checking. Checking my body to gauge if there’s a sexual response, checking to see if I’m muscular enough, checking to see if I’m enjoying something enough with my partner, checking my “true” feelings about something, making sure I understand every word someone says or during a lecture—the list goes on and on.

I also want to talk a little bit about the dull feeling of depression and anxiety that accompanies OCD. Something always felt off; I could never really enjoy what I was doing because my mind was elsewhere (either in the past, future, or telling me I should be doing something else). OCD dilutes your experience of life, and is highly linked to comorbidities like depression and anxiety. The sad thing is, if you asked me if I experienced anxiety before being diagnosed with OCD, I would have told you no. That’s how poor of an understanding and awareness I had of what was going on internally. A lot of this goes back to my particular upbringing and the lack of psychological education in the school system. This needs to change.

What steps toward recovery did you take once you realized you had OCD?

When I finally received the diagnosis, I truly invested in recovery. I reached a point where I had suffered for so long that I was really ready to just surrender to the process and trust others who have gone before me and improved. This in itself is a process that takes time to recognize, because we’re so used to doing things on our terms and in ways that make us feel good (insert compulsions)—but how has that been working for you? I sure knew it wasn’t working for me, so it was time to listen to people who knew more than me.

Keys to recovery that have really worked for me:

  • Investing in an OCD specialist. Not a therapist who treats OCD sometimes, but an OCD therapist. I am a huge believer in this because of OCD’s nuanced nature. It’s by no means a simple disorder to understand, and you really need someone who understands it well to walk you through it judiciously and diligently.
  • Not being afraid to do the hard work! It’s frightening; ERP is probably some of the scariest stuff you’ll ever have to experience. But it is worth it! What I was doing up until that point was clearly not working. So it was time to listen to people who were smarter than me instead of trusting in my (faulty) ways, which led me astray for so long.
  • Finding an OCD support group. It’s incredibly valuable to have sufferers around you who understand how your brain works and to help you navigate the trenches of recovery. Forcing myself to be vulnerable, even when it’s uncomfortable, has made all the difference in recovery. The more vulnerable I am, the more power is starved from OCD, and the greater connections I establish with other sufferers. Isn’t this what life’s about, anyway? Genuine relationships? You can’t be in genuine relationships when you’re constantly in your head worrying about your fears and “what-ifs.” You can, however, be in genuine relationship when you’re open with your struggles, letting people in to offer love and support.
  • Investing serious time into the recovery process. This likely means scheduled ERP sessions in the beginning when you’re getting the hang of it. I realized if I treat OCD recovery like a part-time job, I’ll experience part-time recovery. If I treat OCD recovery like a full-time job, I’m likely to experience true growth. This doesn’t mean you have to quit your job—it just means you must be efficient with your time. I cut out a lot of sources of distraction to create time for recovery. You’re literally retraining your brain to think a different way. This physically can’t happen if you aren’t creating the time to do so! This process is not easy, and demands respect and time.
  • Reading OCD books! Not compulsively, but it’s important to educate yourself on the nature of this disorder. You have to know your enemy if you expect to overcome it.
  • Listening to OCD podcasts! I started with episode 1 of “The OCD Stories” and worked my way up, about an episode or two a week. This provides an overall understanding of the nature of the disorder, how it manifests, and multiple approaches to treatment. The variety on the show is incredible, and you get to hear from all the top professionals in the OCD world. This resource was instrumental in my recovery.
  • Focusing on being of service! Even when I didn’t feel ready, I went to meetings and reached out to other sufferers to try to lend a hand. Even if you’re just getting started, be someone they can listen to. Offer tips about your journey that will help them in theirs. You are capable of helping no matter where you’re at in your process. Some of the most helpful people along my journey have been those who were open about what they’ve been through, because it helped normalize my experience and diminish feelings of being alone.
  • Building spirituality into my recovery process. I’m beside myself with gratitude for becoming a Christian before being diagnosed with OCD; otherwise, I probably wouldn’t have needed God because I was “doing so much better” with all of my psychological growth. Somewhere along the way I recognized OCD has played a large role in my life, but it doesn’t define me. I believe all disorders, illnesses, and suffering are consequences of a fallen world. It shouldn’t be denied that it affects us immensely, because it does. The disorder is present, no denying that. But on a deeper level, I believe there are also spiritual influences playing a significant role and perpetuating the intensity. I now recognize how important it is for me to approach therapy through a lens of attacking spiritual deficits that underlie the disorder, right alongside specific OCD treatment modalities. For example, the need for certainty, the need for control, and a constant pursuit of perfectionism underlie most of my themes. As I seek to resolve these fundamental issues, I’m addressing all of my OCD at once. When I seek truth about faith, I realize how small OCD becomes and how much grander life is. There are so many better ways to spend my time than obsessing in my head about my themes; maybe they’re true, maybe they’re not—but God’s got me. Merging faith and psychology has helped me experience a more significant, more meaningful, richer recovery—and a more significant, more meaningful, richer life.

Do your friends and family know you have OCD? If so, how much have you shared with them? How did you go about sharing your diagnosis?

This is a tough one, and something I’ve certainly struggled with. When I was just starting, since it was such a transformative time in my life, I felt a lot of anxiety around having to tell everyone what was going on in my life. I was also just so excited to finally understand why I was the way I was, and naturally wanted my loved ones to know too. Now, I’m in a place where I am comfortable sharing it with close friends and family in my life, as it comes up organically (not forced). Naturally, I want people in my life now to know what I struggle with (in the past this wasn’t the case; I was so embedded with perfectionist compulsions that I could never imagine telling someone what goes on in my head. One of the many tangible markers of recovery!), but it shouldn’t be done in a compulsive manner. If you feel a ton of anxiety and pressure to share, it’s probably compulsive in nature. If it comes up naturally and facilitates connection in a one-on-one relationship, go for it! I’ve also found that when I’m vulnerable, it helps others open up about their struggles, which strengthens our relationship.

Have you faced any stigma or judgment? How have you handled it?

Certainly. Most of the judgment I’ve experienced comes from a lack of awareness or understanding by those closest to me, regarding mental illness. Originally, I wanted so badly for them to understand my struggle and truly support me in the process. I realize now how ineffective and unnecessary this is. I can barely understand this confusing disorder, so how can I expect those around me to “really get” what I’ve been through? That’s where having people in your life who do understand and you can commiserate with is really critical. Then, there’s less pressure to explain yourself and confess to everyone, and you can just rest in a place of uncertainty: they may never truly understand, they may never really get what I’ve been through, and that’s okay because it’s not a prerequisite to me getting better or living a full life. This also gets tied up in the idea of overcaring what others think of you (which lumps over into social anxiety but also manifests frequently in OCD sufferers). If you’re designing exposures around caring less what others think of you, naturally you will desensitize to people who don’t understand mental illness and your particular experience. This doesn’t happen overnight and is totally a process (I still struggle with it!).

A lot of people with OCD feel frustrated and offended when they see misleading memes about OCD or hear people say things like, “I’m so OCD about my sock drawer.” Others say we have much bigger issues to focus on, such as access to proper treatment. How do you feel about it? If it bothers you, how do you react? 

I tend to align with the latter approach. It is an ineffective use of our time to get thrown off course every time someone demonstrates ignorance about mental illness. I tend to take the approach of trying to show them compassion, i.e., “Man, I really wish you understood, but I accept the multitude of reasons that you don’t.”

If it is someone I’m close with and the opportunity is there to educate them, I will certainly take it. But I don’t get bogged down trying to proselytize to every individual who misunderstands OCD. I don’t think it would be an effective use of our time, and frankly many people aren’t interested in being educated about it and I can’t change that. While it breaks my heart that they throw the term around loosely, the truth is that they probably don’t know how debilitating a disorder it is and therefore are not trying to be malicious.

What’s one misconception about OCD you wish you could clear up?

Just one?! How about a few?

It’s not about the theme. We get so bogged down with the theme of our obsessions, because it feels so real to us. (“This time, it’s actually true.”) Overemphasis on the content keeps us in the obsessive-compulsive cycle. It’s important to do exposures related to particular themes; however, it is absolutely critical to recognize that our brain is doing the same exact process each time, but it just latches onto a variety of different themes. Why is it important to recognize it’s not the theme? Well, that way we’re not surprised when it latches on to a new theme. Because it will!

Instead, we can recognize “there you are again, my OCD buddy,” and treat it the same. It no longer feels like you have to undergo this exhaustive new process all over again with the new theme. Instead, you respond just like you treat everything else: accept the uncertainty, lean into the fear and anxiety, radically accept your experience, do exposure, and then choose to pour into your values.

Stop trying to experience 100 percent resolution of OCD. This is actually detrimental to your recovery process, unrealistic, and unnecessary. When we seek 100 percent resolution, it makes us perfectionistic about our recovery. It takes us away from being a human who naturally experiences suffering during this life. It creates this tendency to strive for a “perfect, 100 percent happy life,” which only leads to more suffering and unhappiness. It’s this constant pursuit of happiness that ironically makes us less happy.

I don’t want 100 percent recovery. I want management of my symptoms, and the ability to live a full life where I passionately pursue my values. This process, in a twisted way, has been incredibly rewarding. I’ve learned so much about myself and how the world works through treatment, and believe I have experienced more as a result of what recovery continues to push me to do. I’m less afraid of normal things people are afraid of. Dr. Jon Grayson routinely says those who undergo OCD recovery become “better than normal” because of their ability to be more comfortable with uncertainty than the average person, and I finally understand what he means now.

I want to be reminded of my struggle (from time to time, not all the time, okay, brain?) to keep me humble, foster reliance on God, and to help others who still struggle. If I’m totally absolved of this disorder, I’ll get rusty and stop practicing recovery, become less adept at serving others, and ultimately pride myself upon my ability to overcome this rough disorder perfectly.

Besides, I don’t believe it’s possible to experience 100 percent recovery. Maybe it is, maybe it isn’t—I can’t know! But this is our brain we’re talking about, and there will always be traces of symptoms and times we slip back into compulsion. That’s when we take out one of our many tools, apply it, and keep on living.

Thoughts and feelings don’t reflect reality. This is huge for OCD sufferers, and something I still struggle with. Just because you have a thought or feeling, it doesn’t always represent who you truly are. It’s difficult to decipher when it does and doesn’t, so what I’ve found that works with the help of my therapist is that when in doubt, treat it like OCD. Handle it just like you would any other OCD thought: accept that it’s there rather than trying to get rid of it, and move forward with your values. Bring the thought along for the ride and keep going with your day.

I probably know what you’re thinking. Yes, it is difficult to know what your values are when you’re consumed with anxiety. “But don’t my thoughts represent my true values?!” Not always. Trust the process; trust that your values will be revealed to you in time if you’re not clear now.

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

Oh my goodness, friend, you are not alone and there is so much help available out there. We are so fortunate to have a treatment sequence that is proven to help—do you realize how many physical and mental health conditions have no gold standard treatment? We don’t have that problem with OCD. We have study after study that demonstrates how effective ERP is. Do the hard work, and you will see growth. Keep your head up, even on your toughest days. There are better days to come, but the key is resilience. This disorder beats you down day after day and it gets worse before it gets better. It’s super easy to feel defeated and give up. But I promise you were created for so much more than a life built upon fear, anxiety, obsessions, and compulsions.

If you ever want to chat about anything I mentioned or to connect in general, please reach out to Alison and she can connect you to me. I am always happy to connect with OCD sufferers and family members of OCD sufferers.

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OCD Treatment: One Size Does Not Fit All

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I always love writing for the International OCD Foundation blog because it makes me feel connected to the wider OCD community. Last week they posted my latest about following your own path to recovery and not relying on just one piece of advice or person to guide you.

What do you think? Have you found any benefit to getting advice from a range of resources?

Learning to Live with Obsessive-Compulsive Disorder

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Have you heard of the Health Stories Project? It’s a wonderful resource I recently learned about when they asked to interview me about my experience with OCD. They made me feel completely at ease, and I didn’t feel at all like they thought my admittedly terrible obsessions made me terrible.

Consider joining their community for support from others. I’ve joined!

Tuesday Q&A: Margaret Sisson

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image (3)Many of us in the OCD advocacy community got into it because we have OCD ourselves. Margaret Sisson became an advocate because her son Riley had OCD. She has done so much to spread awareness, not just about OCD but addiction as well. Even after Riley’s tragic death in 2014 Margaret has continued to go above and beyond and advocate for people with OCD, and her goal is to keep Riley’s legacy alive — she founded Riley’s Wish Foundation and presented on his behalf at the OCD Conference in Boston.

As much as Riley struggled with both OCD and addiction, he never stopped trying to educate others. He presented on several panels at the OCD Conference and he was working toward his Master’s degree in counseling. Riley was hilarious. OCD is hard. It’s draining. It’s depressing. Somehow Riley was able to joke through much of that pain and made others laugh.

Thanks, Margaret, for continuing to be a voice for Riley, and for us.

You were given the IOCDF Hero Award at the 2014 OCD Conference. Much of the work you were doing in the OCD community was on behalf of your son Riley, who had OCD. How did you decide to get involved in advocacy?

When Riley and I went for the first time to the conference in Chicago we both felt we found support, and for once others understood! I decided that by helping and being an advocate, I not only helped others but also Riley. I was very humbled to receive the Hero Award. Most importantly, I was able to tell Riley that it was for him! He was my hero!

It must have been painful to see your child suffer through this illness, and to hear some of the unpleasant details, including those about his addiction. How did you push past the pain in order to help Riley?

Watching your child suffer is very difficult no matter how old they are. But the more I educated myself and researched OCD the more I felt I could help him. I needed to understand what he was going through, and that way I was more equipped to get him to the right treatment.

I think it must be challenging for parents to help young adult children who are striking out on their own and becoming more independent, and perhaps more resistant to parental guidance.

It is hard to help an adult child with OCD. You are encouraging independence but oftentimes that is hard because of their struggles. My advice for any parent whose adult child is going off to college or living independently is setting up a good support team. Colleges are starting to implement programs that help students who struggle with mental health and addiction. The programs are designed to be a community for students and they provide the peer support and accountability necessary to enable sustained recovery and mental health counseling. This gives the students the ability to pursue an academic and social experience in higher education. The program also provides support and encouragement to give back to the community.

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Riley self-medicated, and unfortunately he became addicted, leading to a dual diagnosis of OCD and addiction. How did the diagnoses affect each other, and how did you and Riley approach the dual diagnosis?

Unfortunately, when struggling with substance abuse it became a vicious cycle. Treat one and the other goes untreated and so on. Fortunately, residential facilities are now implementing treatment together. Let me share information from Riley’s presentation on OCD and addiction at the 2014 OCD Conference:

“Substance use disorders (SUDs) are categorized by the dysfunctional use of a substance causing significant impairment in functionality or marked distress. SUDs generally include cravings in between instances of using, obsessions around wanting to use, and the compulsive ingesting of substances. The diagnostic criteria for SUDs, as outlined in the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV), are separated into categories of abuse and dependence depending on the presence of withdrawal symptoms when substance(s) are absent from the body (4th ed.; DSM-IV; American Psychiatric Association, 1994).

Both OCD and SUDs involve obsessions and compulsions. OCD can manifest in a variety of ways. With OCD, obsessions generally coincide with the fear that something bad will happen if compulsions are not carried out. With SUDs, triggers can include emotions, cognitive distortions, false beliefs, and other people, places, and things. Addicts/alcoholics generally obsess about using. With SUDs, rituals include finding ways to use, using, and preparing to use again. With OCD, rituals can include a variety of behaviors and thoughts. Using drugs and/or alcohol can be one of them.

Those with obsessive-compulsive disorder often know that their obsessions and compulsions are not based in reality. They often know that what they’re doing isn’t realistic, that it doesn’t make sense. They often see a decline in functioning, they’re aware of the time they are wasting, and they experience distress. However, they still continue to obsess and carry out the associated compulsions.

Those with SUDs are not so different. Addicts/alcoholics often see the negative consequences associated with their use, and they know the high isn’t worth it. They see clear indications of dysfunction, physical illness, distress, etc. However, they too struggle to stop themselves without help. Many scholars have collected data indicating a strong positive correlation between OCD and SUDs.”

How old was Riley when he was diagnosed with OCD? How did you realize that OCD might be behind his symptoms? Once you knew it was OCD how did you go about treating it?

Riley was diagnosed with OCD when he was 12. My dad was a pediatrician and he actually diagnosed him after I explained his symptoms. It started with hand washing and extreme anxiety over school. The unfortunate part was he spent years receiving the wrong therapy. Talk therapy was all he received for over five years. Not until his senior year did we finally find a therapist who was experienced in ERP. I think that is so important for parents to find the right therapy. The IOCDF is a great resource for families.

Let’s say someone reading my blog also has a dual diagnosis of OCD and addiction and hasn’t told her parents about either illness. How should she approach the topic with them?

This is what I would like to concentrate on through Riley’s Wish Foundation. I want to continue raising awareness and educating others about OCD and addiction. I think we made great headway at the IOCDF conference this year. I was fortunate enough to speak on three panels that discussed OCD and addiction and was so encouraged with the feedback we received. The plan would be to set up a mini track for next year’s conference that continued discussing the dual diagnosis and how best we can help those who struggle with the dual diagnosis.

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I met you and Riley at the 2014 conference in L.A., and he was a hoot! I was practically in tears when he presented at a panel about preventing relapse; I was cracking up. I was shocked when I learned of his death less than two months later. Your life was turned upside down, but you have been determined to carry on Riley’s legacy and help others in need. You started a Facebook page called Riley’s Wish, you presented at many sessions at this year’s conference in Boston, and now you’ve officially launched Riley’s Wish Foundation. How can others get involved to help spread Riley’s legacy or advocate?

I think being an advocate is a real personal decision. Some people are not comfortable telling their own story and that is OK! Being an advocate can also be getting involved with your local affiliate, starting a support group, or getting involved with the IOCDF conference. The conference was life changing for both Riley and myself. I will never forget the support we received at our first conference. After that, Riley and I both felt compelled to help. Riley started the first OCD/addiction support group with Jared Kant. The next year he did his own panel with several of the top doctors. He started the movement to talk about OCD and addiction. He wanted so much to figure out how to help himself so he could go out and help others. I feel that is what I’m supposed to help with now. That way I can honor Riley’s legacy and help others. I think he would be pleased.

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

Educate yourself. The better you understand OCD the more equipped you will be to help. Educate yourself about ERP and the ongoing research on OCD. As a parent, you are your child’s best advocate! And some personal advice: Humor and laughter are good medicine, too. Riley would be the first to tell you that!

Join a Live Chat with Dr. Lee Baer

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Want to participate in a live chat with Dr. Lee Baer, author of The Imp of the Mind?

Here’s how!

ocdandfamilies.org is having their first live discussion held in the Unacceptable Intrusive Obsessions Forum on Wednesday, May 13, at 7 p.m. EST. If you or someone you know is interested in joining the support groups, please select the “I’d like to join a Forum” page from the “Peer Support Forums” menu at ocdandfamilies.org.

Dr. Baer will answer your questions about inappropriate or taboo intrusive thoughts. I wish this had been available to me when I was really struggling–I hope you take advantage! Dr. Baer is incredible.

Please register before May 13 so we know whether we have an interest to proceed! To participate, just register, and then log in at 7 p.m. (EST) on May 13 and go to the Unacceptable Intrusive Obsessions Forum.