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The impact of OCD and related anxiety based disorders on the family is often overlooked. In this multi-part series, we present first-hand accounts of the ongoing impact of OCD, BDD, and Bipolar Disorder on one man and his family, as told to Elizabeth Kassel, MSW, of the OCD Center of Los Angeles.
understanding and treatment
My name is Robert and I have Obsessive-Compulsive Disorder (OCD). I am a thirty-four year old, single man and work as a personal fitness trainer. My story is not typical, but it is the only one I have . . .
I was four years old when I looked at a picture Bible and saw an image of Satan. My thought was, “Satan is cool!” He wore a red cape and was “ripped!” My obsession was that, since I thought he was cool, I was evil and I would go to hell. I knew that evil people hurt others, and I was terrified of hurting someone. It never occurred to me to tell my parents. I figured all kids thought this way too, but the other kids just seemed to be “managing” it better than I was. They didn’t appear bothered by the eternal consequences of their actions like I was. They were talking back, swearing, being disrespectful and acting cocky, but weren’t worried about going to hell. I figured that thinking Satan was cool and that I was evil was “normal”, and that I just had to be more laid back and figure out how to worry less.
One day when I was fourteen, I had an intrusive thought that I wasn’t funny. I couldn’t shake it and kept a journal of funny quips so I could be “funny” in social situations. I tried to keep up the compulsion of memorizing stuff from the “funny book” so I wouldn’t be “slow”. I wanted to be quick witted, playful and charming. The irony is people said I was funny – I just didn’t “feel” like I was. I fought to I remember “my lines” to get rid of the anxiety. At about the same age, I had the obsession that my penis wasn’t the right size. I was pre-pubescent and a “late bloomer.” When in the locker room at school, I compared the boys’ penises to my dad’s penis and thought, ”Wow! They’re tiny!” I even asked my mom one day, “Does size matter?”
During this time, I also became obsessed with my dad singing loudly in church. I’ll never forget the day that I noticed the faces of people laughing at my dad’s passionate singing. I wanted to kill them. I would tease him about it around the house sometimes, but I felt guilty when I would see my mom quietly motion to him to “tone it down” because she knew how much it bothered me. She told me I should be proud of him and I knew she was right. I just couldn’t stop thinking about it.
At sixteen, in my junior year of high school, I couldn’t get rid of the thought that I was repulsive. My stomach used to hurt and make loud noises. I would sit in class and hold my breath in hopes that would take the noise level down, thus causing me not to be seen as “repulsive.” I was exhausted trying to hold my breath to control the noise and went to lots of doctors including gastrointestinal specialists. The tests showed I didn’t have an ulcer or anything else of concern. I would say, “My stomach won’t stop hurting and I feel like I’m going to throw up every day.” I realized that it didn’t hurt when I didn’t think about it and they told me to just not think about it. If only it were that easy! I couldn’t stop. I felt stupid because I couldn’t stop the thoughts and felt that the doctors were insensitive to say the least.
During my senior year I was no longer worried about my stomach and its noises. I was in love and happy, and life was good. But this was short lived. One day I raised my hand to ask a question in class and I saw a sweat mark under my armpit. My family lived in Georgia back then, so it was pretty hot a lot of the time. But this was the first time I ever noticed my sweat. I remember saying to myself, “What in the world is that? I have a huge patch of sweat in my armpit!” I was disgusted. My obsession became “I am repulsive due to my excess sweating.” The more I worried about it, the more I would sweat and the more anxious I would get. It was a vicious cycle. One of my coaches commented on the amount of sweat I produced, so I knew it wasn’t “in my head.” I strategized by wearing three shirts at a time and kept going to the restroom to take one off when it got soaked. I thought, “I’ll get this under control and come back to class.” I couldn’t concentrate in class and spent many periods in the counselor’s office due to the thought that my sweating caused me to seen as repulsive. This obsession drove me at twenty-three years old to get the surgery called a sympathectomy, in which a part of the sympathetic nervous system is severed so the face and hands won’t sweat. The surgery was successful, but unfortunately, it didn’t stop the intrusive thought. I had never heard the words Body Dysmorphic Disorder at that time, but in retrospect, I can see that BDD is a part of my OCD, and I still have this obsession to this day.
As long as I can remember I would make “wagers” with the cracks in the sidewalk and the streetlights. My mind would say something like, “If I get through the intersection before the light turns yellow, my mom won’t die tragically.” The lights were usually right. I didn’t realize it then, but this was my way of trying to dodge doubt and gain some sense of certainty. I would play this “game” with anything I was obsessed or anxious about. When my dad was very ill and about to go into surgery, the lights “said” he would get through it. The lights were correct – he did get through surgery. But then he died the next day. There were numerous ways to “win” and “lose” at this game. Some days the wager was, “If I get through the intersection before the light turns yellow, then I’m not repulsive.” But if I got through the light in time, and then saw in the rear view mirror that it had turned yellow, I would think “I am repulsive”.
My mom was worried about some of my behavior when I was seventeen. She noticed I couldn’t make the decision of whether or not to switch schools; I was obsessed with my stomach pain while holding my breath to cut down the noise, I wasn’t sleeping and I was looking at a lot of pornography. She felt I was depressed but I assumed it was normal teenage angst. Once again, I figured everybody went through this stuff. My mom took me to a psychiatrist and after a thorough assessment; I was given the diagnoses of both OCD and Bipolar II Disorder. When my mom heard for the first time in his office about me making wagers with the “lights” to prevent her from dying tragically, she lost it. She recalls not being able to breathe and feeling overwhelmed with sadness hearing how much anxiety and pain I had been in for so long.
Having Bipolar Disorder has greatly compromised treatment for my OCD. My experience has been that my Bipolar meds drive my obsessions. When I try to be “mindful” of my thoughts, as is recommended in OCD treatment, it tends to increase my mania. It’s like being stuck in my skin! Fortunately, after many years of trial and error, I have found a medication that helps me – I am currently on Luvox, which helps stave off my morbid 
obsessions. But if I forget to take it or just skip it for a few days, I want to shoot myself in the head! The obsessions are exhausting and I just want “out” when I’m not taking this medication.
I tried to quiet the obsessions with pornography, gambling and dreaming about death – the ultimate way to stop the thoughts. I did have two suicide attempts, but it’s not easy to pinpoint whether it was the OCD, the Bipolar, or both that contributed to the desperate “cry for help.” I remember cutting my wrists and bleeding to relax. I remember thinking that if I “emptied everything out”, everything would lose its importance. I also overdosed once on the anti-anxiety medication, Klonopin, and my heart rate was down to 30 beats per minute. I’m not trying to glamorize this by any means. I’m just illustrating the attempts I’ve gone to in order to try to escape from the obsessions and anxiety – to get rid of my feelings of hopelessness and utter exhaustion. My mom made me promise I would not kill myself while she was alive. I have kept that promise.
When I was twenty-four years old, my mom convinced me to try Electro-Convulsive Therapy (ECT). I don’t recall being any more depressed than usual during the winter of 2003, but according to her, my depression was the worst it had ever been. Unfortunately, the ECT did not have the dramatic effect we had hoped for. I don’t regret trying that extreme therapy (I did it for my mom), but my memory is not as sharp as it used to be. Again it’s difficult to pinpoint if it was the OCD or the Bipolar that caused the extreme depression, or a combination of the two, but I can tell you that, to my core, the intrusive thoughts left me feeling lonely, fearful, angry and desperate.
I would have to say the most frightening and disturbing obsession I still have is that I’m evil and will hurt someone. I now know this is what is known as Harm OCD. The one obsession that affects me the most on a daily basis is that I’m repulsive because of my excess sweating. As a personal fitness trainer, I do cardiovascular exercises with my clients and I inevitably sweat. Not a day goes by that it doesn’t come into my mind numerous times. As for living with OCD, I think the worst part is that my true self will never be known. The flip side is that I’ve never met a dumb person with OCD and I’ve been forced to get a different perspective on things due to the disorder.
My advice to others with OCD is to not try to explain your obsessions/compulsions to those without OCD. They will never understand it and will only make you feel more alienated. Also, I recommend taking your prescribed meds to a tee without deviation. And though it’s not easy, try to remember that a thought is just a thought. Maybe try telling yourself “this thought can’t beat me!” Even though the thoughts are processed as true in my head, I know they aren’t true. I say get on with the business of living despite what’s going on in your head! Don’t fight the thoughts, fight with action for who you want to be, and that will save your life.
I also think it’s important to get at least one mentor to get an outside look at your actions and ideas – someone who will “shoot you straight”. I believe wisdom is never gained alone. It can’t be attained without other people and is crucial. Without wisdom, you’ll never have the perspective to change. And lastly, exposure, exposure, exposure! Exposure and Response Prevention has been the most effective part of my treatment for my OCD. So don’t waste your time and money with “alternative” treatments that don’t work.
My advice to family members and loved ones of people with OCD is to do your homework and learn as much as you can about the illness. I often feel like other people just don’t understand how overwhelming OCD can be. It’s as if there is a bridge that fundamentally can’t be gapped. My mom bridged that gap by putting herself in my shoes. She was relentless in her quest for information and treatment options. It’s important not to coddle the loved one with OCD or reinforce their obsessions by giving reassurance. It might seem harsh but it will save their life. I no longer ask my mom if I’m repulsive because I know what her answer will be . . . “Rob, I can’t answer that question.” I don’t like living with OCD, but I accept it. I am committed to living a full and adventurous life despite it and encourage others to as well.
To read part two of this series, in which Rob’s mom discusses her struggles to cope with her son’s illness, and to get him appropriate treatment, click here.
•Elizabeth Kassel, MSW, is a psychotherapist at the the OCD Center of Los Angeles, a private, outpatient clinic specializing in Cognitive-Behavioral Therapy (CBT) for the treatment of Obsessive-Compulsive Disorder (OCD) and related conditions. In addition to individual therapy, the center offers six weekly therapy groups, as well as online therapy, telephone therapy, and intensive outpatient treatment. To contact the OCD Center of Los Angeles, click here.
18 Comments
I was 19/20 when I was officially diagnosed with OCD and I’ve gone through the valleys with this disease. It never leaves me and I can certainly recognize times it showed up in my childhood. There are chunks of time when things are better but I’m going through another valley right now. I’m glad you decided to share your story, it’s nice to know you’re not alone out there. Thanks!
Hi Robert, welling up reading this. Can relate to quite a lot of it. I grew up thinking everyone ‘manages’ thinking that they are horrible and ugly too. It is very moving to read your story and thanks for the advice. I need to get working on some ERP. Thanks for writing this. All the best, Di
Thanks for the post. No doubt, OCD can be a major hurdle to living a healthy normal life. May God help us to overcome it.
-Amir
Wow, I have OCD and Bipolar 2 as well and this explains the anguish well. It’s definitely a combination of disorders that does not go well together and the meds are difficult to find that compliment each other instead of create further problems. Thanks for sharing your story!
Thank you for this honest and brave post. I sure can relate to “mom,” as I remember the shock and heartbreak I felt upon learning how much my son had silently suffered with severe OCD. I too am doing all I can to promote education and understanding of what OCD really is. And, as you say, we must spread the word that ERP Therapy is what works in treating the disorder. This therapy literally saved my son’s life and I am so thankful he is doing well. Thanks again for this post and I look forward to reading part two.
Thanks so much for your post! It’s very brave to bare your soul like that. Thanks for letting us know we’re not the only ones who feel like this!
I have OCD, BDD and compulsive skin picking, which is all a vicious cycle too. I pick my skin because of thoughts that I can “get the evil in me out” which leads to infection, scabs, and scars which fuels me feelings of being “hideous” and worried about what others think is wrong with me, which leads to thinking I’m as bad inside as my skin looks…
UGH!
Have you had much luck in your search for treatments of BDD?
Thank you.
Hello Katie,
Thank you for your comment and interest. I’m glad Rob’s story reminded you that you are not alone.
It is not unusual for those with OCD to experience symptoms that wax and wane over time. Hang in there through this “valley.” I encourage you to seek treatment with a therapist who specializes in OCD. Take care.
Hello DianaP,
Thank you for your comment and interest. It can be very emotional to identify with someone else’s story so closely. I’m glad Rob’s story is motivating you to pursue treatment with Exposure and Response Prevention (ERP).
Hello Amir,
Thank you for your comment. Despite the hurdle of OCD, Rob shows it’s possible to live a full and meaningful life.
Hello Jamie,
Thanks for your comment. I’m sorry to hear that you have been suffering with the same combination of OCD and Bipolar Disorder II as Rob. I can see how you would identify with his anguish, and with his difficulty finding the right medication. I encourage you to find a therapist who specializes in Cognitive Behavioral Therapy (CBT) to complement your meds.
Hello Erinn,
Thank you for your comment. I agree – it takes courage to acknowledge and challenge the obsessions and compulsions that a person with OCD experiences. And, yes the vicious cycle certainly is insidious.
I encourage you to look into Cognitive Behavioral Therapy (CBT) with a trained professional for your OCD, BDD, and Dermatillomania. I will forward your question about BDD treatment on to Rob. Take care.
Hi Erinn-
I could write a book but in an effort to make it brief, I will say this: I have found no cure for BDD, though medication, along with CBT, helps a lot.
Exposure to the pain (thoughts/emotions) is first and foremost. Feel all the fear/doubt and do the opposite of what your mind tells you. Once you can learn to breathe in the fire of torment and anxiety, you will be able to distinguish what is real from what is your mind cycling you back. I have never met a person with harm thoughts who would hurt anyone. In fact, I think you are proof that you’d rather mutilate your own body in order to “save” those around you from your evil.
I fight evil by accepting I might be evil . . . owning that I am capable of it just as anyone is capable of it. But I do the right thing. We can’t control our thoughts and feelings but we can control our behavior. Use CBT to help you stop picking your skin and it is possible you will discover much good you could possess. ☺
~Rob
Hi Janet,
Thank you for your comment and interest. I’m so glad your son is doing well as a result of Exposure and Response Prevention (ERP), and that you are making it your mission to spread the word about evidence-based treatment. Stay tuned for Rob’s mom’s touching perspective in the next installment.
Thank you for your story. I have OCD and as a teenager, had some obsessions similar to yours (religion, sex, doomsday/satan…). I now have severe skin picking issues. Started about 10 years ago and doesn’t seem it will ever get better. I had never heard of ERP butI”m going to look it up.
Hello Gypsy,
Thank you for your comment and interest. I’m glad you could identify with Rob’s teenage obsessions and, hopefully, his recovery.
You should know that Exposure and Response Prevention (ERP) is primarily used in the treatment of OCD. It is not generally used for the treatment of Skin Picking Disorder, which is more effectively treated with a type of Cognitive Behavioral Therapy known as Habit Reversal Training (HRT). You can click here to learn more about Skin Picking Disorder and its treatment with HRT. You can also download our free online report on Skin Picking Disorder at https://ocdla.com/skin_picking_ebook_signup/.
Take care.
Robert, your courage to reveal your darkest OCD obsessions and past experiences is inspiring, as is the fact that you survived over 20 years of hell.
I’m 25 and my OCD is hell incarnated. I’m so astonished by how similar my past and present condition, medication, relationship to my mom, and suicide issues are to yours; it’s if another me wrote this story but with some different obsessions. I won’t bother elaborating in this comment, because I’d end up exceeding the length of your blog post. 🙂
All I can say is that a mere thought cost me everything I could ever hope to be and do — and torments me as if I hang crucified for life. It led to and left permanent physical issues, which in turn intensify the exquisite OCD, forever destroying my ghost of a life.
Without anyone to confide in or any med or therapy that’s been effective yet, the only 2 things that kept/keep me from offing myself are Dr. Jonathan Grayson’s rare gem of a book on OCD, traditional Eastern Mindfulness, and my mom (I’ve made the same pledge you mention). You being 9 years ahead of my age and still coping gives me a bit of hope. If you read this comment and are still having much difficulty, try Grayson’s approach and guidance and Jon-Kabat Zinn’s pure mindfulness meditation with your current treatment. I’ll be sharing your amazing post with some OCDer friends, my OCD bro and coming back to it myself. 🙂 Thanks for sharing, and thanks to OCDLA for their great blog section.
Hello Stefano-
Thank you for your comment and interest. I’m glad that you were inspired by Rob’s story of challenge and survival. He makes it his mission to not only survive, but thrive despite the OCD. If you haven’t already, I encourage you to look into treatment with a therapist who specializes in Cognitive Behavioral Therapy (CBT). I have forwarded your comment on to Rob. Take care.
Hi Stefano,
I am Rob’s mom. My heart goes out to you and your mom on this journey. Keep your promise!!:)
I do think one of the most amazing things, and it is the thing that convinced me that Rob had OCD and not just “being difficult” :), was the similarity of his story and research I did. One day I went to the library (before they invented Google) and cross-referenced, pathological gambling, sexual obsessions and BDD just to see what came up. What came up was a research article where the whole population sounded like they came from the darkest, most private conversations in our living room.
I told Rob and he said, “Man, they’re going to want to meet me.” I said, ” That’s the point, they already have.” Researchers don’t think our experience is strange at all. They know. They just don’t know what to do yet. However, the fact that there was a whole group they could get together to study these 3 things together made me realize how normal his OCD was for OCD. It is painful and hellish.
I wish you strength and patience.
Rob’s mom (and proud and fortunate to be)