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.

Life with OCD

Those suffering with OCD require 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 Mindfulness Workbook for OCDobsessions.  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.