I’ve never known life without OCD (Obsessive-Compulsive Disorder). From as far back as I can remember intrusive, unwanted thoughts and fears have plagued me.
The first “episode” of OCD that I can clearly remember was when I was about 5 years old. I became totally obsessed with thoughts about heaven, hell and eternity. I was raised in a church going home where religion and spirituality were very important. I would spend hours trying to figure out “eternity”. I felt that if I could somehow “figure” it out, I would be okay.
The concept of not having an end, as is the case with eternity, was far more than my 5 year old mind could handle. I was “scared” of eternity. I prayed to both God and the Devil at the time, asking, no begging them to help me, to help me STOP thinking and worrying about eternity. In time, the “eternity obsession” faded and about the same time an entirely different set of symptoms appeared. I began feeling compelled to do certain physical motions, such as eye blinking and making “clicking” noises with my tongue. Even at the tender age of 5 or 6, I fully KNEW that there was something WRONG with me, that this behavior was not “normal”, but I couldn’t quite figure it out. I did my very best to hide what I now know to be “tics,” holding it all in for as long as I could and then finally releasing it all once I was alone. I usually did this in bed at night, which is also a darn good place to have obsessions. Bed time was not my friend.
I can remember standing back and watching other children, looking to see if they were doing the same kinds of things I felt so compelled to do. They were not. It messed with my self-esteem alot and I pretty much suffered alone as I did not really want to tell anyone about the weird and constant thoughts I had or the repetitive, senseless physical motions I felt “compelled” to do.
By the time I was 7, I very much had a “secret world” going on inside myself, one that I dared not share with anybody. At times, I thought I was crazy, at other times I thought I was just a “bad person” or a “stupid person”, anyway I looked at myself, I definitely wasn’t who I wanted to be.
Obsessions, fears and panic attacks would plague me off and on during my adolescent and teen years, but it wouldn’t be until I was 20 when I had symptoms bad enough to put me on the Psychiatric ward. This would not be my first experience with Psychiatrists, as I spent a part of my teen years seeing one. Unfortunately, at no time was I diagnosed with OCD or Tourettes, those diagnoses would come much later. During my time in the Psych ward, I was given several different medications including tria-vil, elavil, sinequan, ativan, valium, zanax, desaryl and others that I can’t even remember. What was my “official” diagnosis at that point? “Schizoid Affective,” which looking back now and having the knowledge that I have now, that diagnosis would be a huge laugh if the whole thing weren’t so sad!
Although I had always thought of myself as very intelligent, I found myself at the age of 20, sitting across the desk from Social Workers who told my Mother that I would NEVER live a normal life. That the most independence I could ever hope for was to live in a half-way house. Thankfully, I NEVER believed any of that for one second. I was definitely down, but not out. When everyone else wanted to “give up” on me, in no way, shape or form, was I willing to give up on myself. Looking back at my life and the tremendous struggles that I have had, my “fighting spirit” is probably what saved me. I partially attribute that to having Tourette Syndrome, where “tenacity” and “perserverance” are well-recognized tourettic traits.
I would struggle with Obsessive-Compulsive Disorder pretty consistently for the next 15 years, with most of my obsessions now revolving around the fear of acquiring HIV and AIDS. Although I had no risk factors for getting AIDS, I became absolutley obsessed with the fear of being “contaminated” by the HIV virus. During a 8 year period, I would have more than 40 HIV tests, all negative of course. But due to the doubting nature of OCD, I would no more than hear a “Negative” result from the clinician, that I would doubt what I actually heard, doubt the accuracy of the test, doubt the honesty of the Doctor and doubt that the test was even performed. I could think of a million scenarios of “why my negative test result could not possibly be accurate.”
And so it goes with OCD. It’s a never ending circle of doubt and deception. On the very off -chance that I received my “negative” test results on a rather good OCD day for me, I would then walk to my car, perhaps see a bandaid lying on the ground and somehow “convince” myself that I now acquired HIV from that bandaid. A reason for another test!
Like most people with OCD contamination fears, I clearly knew that I was being irrational, but it didn’t matter, the OCD had a life of it’s own and it would always win. And those of us with OCD contamination fears can come up with the most far-fetched and crazy “beliefs” on how we could become contaminated, most of them totally flying in the face of reality. That’s one of the hardest things with OCD is that for the most part, we are completely lucid. We KNOW what we are thinking and doing is crazy, but we can’t stop. So not only do we deal with the horrors of the OCD, we struggle greatly with our own sense of self esteem because we cannot control the OCD.
Somehow during all this HIV/AIDS craziness, I was still able to marry, work and have a child. It was not easy, it never was. Medical treatment for me was a nightmare and I did absolutely everything I could to avoid it. Just walking into a physicians office for me, meant a future HIV test. At this time, I was under the care of doctors who were well aware of the problems that I had although it would be some time before I would hear “OCD”. My internist kept me on an antidepressant called “Sinequan” and I did receive some small measure of relief from that.
One day, while reading a new book on AIDS (I amassed quite a library on the subject!), I read that there are some people that get tested over and over for HIV because they suffer from what is called – Obsessive Compulsive Disorder. The book further stated that HIV testing wasn’t their “real” problem, the “real” problem was the Obsessive Compulsive Disorder. I could NOT believe it! They were talking about me! I felt the sky opened up to me at that moment! It would take a few more years and more research on my part to finally ask my Doctor about trying Prozac, which I had found out about by researching OCD and it seemed promising. Well, I can honestly say, that the from the very first day I took Prozac, I experienced a true miracle in my life.
Like many, if not most people with severe OCD, I have several OCD things that hang around in my life. I do some counting, I do ALOT of checking. I actually had one 5 year rather intricate nightly checking ritual that mysteriously disappeared by 2nd day on Prozac. It was AMAZING! And my contamination fears about HIV lessened and lessened and although not completely leaving me, the nearly incapacitating grip that it held over my life ceased. I was a new person, a fairly “normal” person, something that I never in my whole life thought I’d ever be. I was able to pursue my goals and dreams with wild abandon and I did and still do, just that.
I have an extremely HIGH level of functioning for ANYONE, much less someone with OCD. I am a dedicated athlete, I travel with my sport, I coach children. I have gathered alot of accolade and notoriety with my sport and what I have done in it and with it. I’m well known enough in my town and state, that for now, I choose not to reveal exactly what sport I’m in as I do coach children and at this point in my life, I would do nothing that could in any way jeapordize that. Unfortunately, we still live in a society that does NOT understand mental illness and neurological disorders and those of us with such problems are VERY likely to experience misunderstanding and prejudice.
Some day, I would like to come totally “clean” with my OCD and Tourettes because the vast majority of people that know me will be absolutely stunned. No one would ever guess what a struggle life has been for me. People see me as accomplished and very “togethor”, many probably would not even believe me if I did tell them! But I think my story would be important for others out there who are also struggling with OCD. My story is one of hope and I hope that just by telling this small part of my story, that I can help someone out there with OCD who reads it.
Do I still have OCD? You bet! OCD is as much a part of me and who I am as the tics I have from Tourettes. I still count, I still check, I still wash my hands pretty darn good, but the level of which it interfers with my life is “acceptable” to me. Sure, it would NEVER be acceptable to a “normal” person (and I use that term loosely), but to me, it’s a miracle! At least for me and my OCD, the right medication made all the difference in the world and I encourage everyone with OCD to NEVER give up. If you’ve tried all the medicines, try all the new ones that come out. We are gaining alot of information about OCD and I’m confident that new and even more promising treatments lie ahead.
Most of all, I would like other OCD’ers to know that you are NOT alone and you are definately NOT crazy. If this is what your being told, ignore it, it is NOT the truth. Love yourself, believe in yourself and NEVER stop trying to tame this wild animal inside us called OCD.
The content in this post is mirrored from my original OCD site here;