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 "perseverance" 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 absolutely 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 jeopardize
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 "together", 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 interferes 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 definitely 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.
Mary