I’m just going to preface this by saying that me being diagnosed with Obsessive Compulsive Disorder is not something I usually talk about. It’s not that I’m ashamed of it exactly, it’s more that I don’t really know how to put it into words. Well, it’s that, and the way people tend to react. 1. They either say something like, “I know what you mean, I can be OCD too at times,” or 2. They look sort of frightened and confused as if I should probably be in a mental hospital. I don’t blame anyone for responding in those ways. I mean, it’s usually depicted on television as something funny, quirky, or quite common. The reality however, is quite devastating… and when I share that reality, well, it tends to make people uncomfortable. So if you don’t want to be uncomfortable, you should probably stop reading now. Here goes…I’ll do my best to explain, but forgive me if it gets confusing. There is simply way too much involved to portray a life with OCD fully in one post.
When I was about eight years old (or at least that’s the first time I can remember), I had my first “obsession.” An obsession, when referring to OCD, is the thought part of the disorder. My first obsession was thinking that I continuously had to cover my right hand and forehead or I would go to hell. (Why I thought this as an eight year old is a conversation for another time all together.) I thought about it all day, every day. Next, came the compulsion. The compulsion, with OCD, is the action part. My compulsion became that I had to cover my right hand and forehead at all times. You see, the obsession brought such fear and anxiety that I had to do something about it – enter the compulsion. Following through with this compulsion eased the feeling of fear and anxiety, but only for a short time. It never lasted. If I did try to resist the compulsion, it was as if my entire body would go into fight or flight. And so started the cycle of fear and torment that would come to consume my life for many years.
The forehead and hand thing didn’t last long. It quickly developed into more abstract and widening causes and effects. I would have fleeting thoughts about terrible things: my brother being mean to me, a friend hating me, my parents dying, me dying, being beat by strangers, getting into a car accident, getting sick (how ironic), etc. The longer I had OCD, the more creative and disturbing my obsessions became. It was no longer just one thought that brought on fear and anxiety but dozens of thoughts – each more bizarre and unsettling than the previous. The compulsions also changed. Instead of covering my forehead and right hand, I would now scrunch my lips up to my nose a certain number of times, or count patterns with my feet as I walked, or flip the light switch in a certain manner. Each time I followed the pattern correctly, I had relief, if only for a moment. As I got older, the thoughts also became more defined. They turned into an internal voice (several actually) that were as clear as my own thoughts but evil in the way they “spoke” to or interacted with me. As long as I followed their ideas for compulsions however, I could keep the fear of the obsessions from coming true.
… Am I starting to sound crazy yet? Just keep reading…
Another thing that happened as the OCD developed further, was that the compulsions began to take up more time. They became harder and harder to hide. It would suffice to say that I had become a master at keeping the OCD a secret. It’s strange because on some level, I was so young when I developed the disorder, I wasn’t able to recognize that these weren’t normal thoughts. In fact, they weren’t my thoughts at all, they were part of the disorder. (That’s the one thing I wish someone would have told me at the time. The voices and thoughts in my head were not mine! That horrible voice telling me my family would die if I didn’t touch the door knob a certain number of times, was not my voice… and I didn’t have to listen to it!). The other part of me however, must have known that my actions (the compulsions) were not normal. I remember that I hid them. I didn’t want anyone to see me flicking my fingers in a pattern or touching my ears in a specific order, a certain number of times.
I don’t remember how many years it was before my parents found out. I can’t even remember how they came to know about it. Maybe I wasn’t as sneaky as I thought I had been. In any case, I know that I didn’t start to get “help” until middle school or early high school. I also remember the fear in my parent’s eyes. I remember that the counselor I saw had no idea what to do with the things I shared with her. I didn’t share much. By now I was pretty aware that the thoughts/voices were not good thoughts to have and I remember that I was way too embarrassed by them to be honest. (Shame: another commonality of those who suffer from OCD). I however, still didn’t realize that they were not my thoughts. That just because a horrible image or voice came into my mind as an obsession, did not mean that I was thinking them. It was the disorder! I remember the psychiatrist I saw later, and the several drugs I was put on to counteract the OCD. I also remember that none of them worked and that they made me feel even worse. I remember one time specifically at a Blockbuster Video (I just dated myself), when the obsessions came rolling in. The most obvious compulsion was to straighten videos. As funny as it sounds, I became so overwhelmed by it, that I had a complete panic attack. The room started to spin and I had to run out of the store.
These sorts of episodes and half-hearted efforts to get help went on and on until about the end of high school. At that point, I decided it was just easier to live with the OCD than to keep trying to get help from people who didn’t understand …or worse, who were condescending and damaging. I was able to coast for a few years. At times, the obsessions even seemed to subside somewhat. At least I could go more than 5 minutes without having an obsessive thought (something that didn’t happen for many years). Almost every minute of my everyday life was plagued by these horrible thoughts/voices for years… and no one knew. I still find it hard to believe I lived that way for so long. It was shear torment.
Any amount of relief from OCD during that timeframe however, was quickly filled by a new type of obsession. In my late teens and early twenties, I had developed an eating disorder. Maybe this was part of the OCD – it’s hard to say. What I am sure of however, was that it was devastating. I had never known depression like that before in my life. Since this post is about OCD though, I’m going to sort of skip over the eating disorder chapter (I talk more about it in other posts). I just wanted to mention it to say that it strangely traded off for some relief from my typical OCD symptoms.
Moving on. At about the age of 23, the OCD started to rear its ugly head again, in a much more forceful way. That, and I started to develop a lot of strange physical oddities. Weird things like peeing blood for three months straight (they actually thought that I might have had bladder cancer), heart palpitations for no reason, hypothyroidism, and almost (or actually) passing out from low blood pressure. My anxiety had also reached an all time high. I was experiencing full-blown panic attacks that left me incapacitated (I’m talking shaking, screaming, crying on the floor, holding my head with a nose bleed, incapacitated). I was also working at a pretty demanding job at the time. I was working anywhere from 50 – 80 hours a week while still trying to take college classes. It was a recipe for disaster. The OCD took over. It was my only console. Still, almost no one knew… or at least not directly. I know that my boss and coworkers noticed the change in my personality that had carried over to work. I went from a positive, hard-working employee to someone who was bitter, angry and miserable. Of course no one knew that there were much deeper issues at bay (Heck, I didn’t even know fully – which I’ll explain in a minute). It was quite honestly, aside from these last couple years of treatment for the late stage Lyme disease, the worst time of my life. As a result of the overwhelming psychological and physiological challenges I was facing, I also fell into a deep depression. I didn’t want to live. I was still battling the eating disorder (albeit, less severely than before), the OCD had all but taken over, and my body seemed to be breaking down. That time-frame marked the beginning of my search for real answers. ThoughI had experienced challenging physical and psychological symptoms my entire life, this was the first time that I truly thought something more could be the cause. And so began the years of tests, misdiagnosis, and condescending medical professionals (but I’ll save that story for another post). During those years, I continued to go downhill. Every job I took from there on out would have less hours than the one before it, until I was only working 16 hours a week. Even then, I could barely handle it. I had completely fallen apart – both physically and mentally – and still I kept it a secret from almost everyone. By the time I received the diagnosis for late stage Lyme disease, I had almost given up hope for this life.
Looking back now, it all makes sense. While the OCD was one of the first and main symptoms (at least psychologically) that was caused by the Lyme, it’s now easy to see how many other symptoms were also caused from the Lyme disease. So where does that leave me today with OCD? After treating the Lyme bacteria (Borrelia burgdorferi), I have experienced relief (albeit waning) from the severe Obsessive Compulsive Disorder that has all but consumed my life since I was a little girl. I have had days, and almost weeks, where I have been free from the thoughts and voices. Treating the bacterial infection that has drilled its way into my brain, has made all the difference. Although I still have bad days with the OCD (that most definitely coincide with the bad days in my treatment in general), I have a hope that I didn’t know still existed. I have felt true relieve from the obsessive thoughts that have plagued my mind for over the past two decades. I have tasted freedom… and know that, along with being physically well, I will one day be fully healed from the devastation of Lyme disease and its many many side effects. I believe, with everything in me, that I will one day be able to say that I do NOT have Obsessive Compulsive Disorder. I know this, and I am no longer ashamed to talk about the struggles I have faced because of the OCD. I know that they do not make me crazy or weird, or in any way less of a person… if anything, these struggles have made me into the person I am today. I am incredibly proud of that person and only hope that sharing this part of my story, in an open and honest way, may help someone else to realize that freedom is possible and that there is a life more abundant – no matter the cause of the struggles. If you want to hear more about my battle with OCD, please feel free to email me… thanks for being willing to be uncomfortable while I share my thoughts.
“Don’t believe everything you think.” -unknown