Tuesday, September 14, 2010

Like one disability that is radically misunderstood by the general public wasn't enough!

Today, during what I thought was going to be a routine examination, I had a big piece of news dropped upon me by the doctor. She diagnosed me as having Obsessive Compulsive Disorder, an anxiety disorder that is familiar enough to the general public by name, but remains as widely, if not more, misunderstood than ASDs.
I had actually before been diagnosed with OCD, at the age of five by a medical practitioner in my hometown, after I showed "strange" behaviour in school. But my mother didn't agree with the diagnosis, perhaps out of embarrassment, or out of a misunderstanding of OCD meaning that I should have kept my room spotlessly clean, and she didn't put any more thought into it. The last time it was mentioned was when I was diagnosed with Asperger Syndrome, and my mother was so embarrassed she didn't even mention it by name, and wrote down what the Doctor had diagnosed me with and passed it to the psychiatrist without giving me a chance to look at it. It was only by my own snooping and invoking my right to know my own medical history that I learned of this later.
So naturally, I was familiar with the possibility, but had not given it much thought. Much of my behaviour that is the criteria for diagnosis was behaviour I dismissed as being related purely to my Asperger Syndrome, rather than a signal of another disability. Nervous habits, highly ritualized behaviour, an aversion to mixing food on my plate, the need to knock the walls in a room with my knuckles before sleeping in it, clawing and kneading clothing, furniture, and wallpaper to calm down, sanitizing my doorknobs, and having to touch my laptop, bedpost, or toes before remembering something all sounded like something that a typical aspie experienced to me. I have many other ways of filling the criteria, but they're either extremely triggering, personal, or downright embarrassing, so I am opting out of sharing it on this blog. But with a bit of independent research from the library and going more into detail with the doctor, I decided that the diagnosis fit, and I've now accepted it. In addition, with no surprise to me, I received a diagnosis of PTSD and Pica, both of which I already knew or suspected I had, but had not obtained an official diagnosis for until now.
I'm anticipating many changes in my life owing to this diagnosis, mainly in my perception of myself, and how my disabilities will affect the way I am treated by society. I'm hesitant about fully "coming out" as being Obsessive Compulsive, because I worry not only about minute things like being jokingly called "Mr. Monk" and asked if I mind a lamp being moved three centimetres, but big things like being dismissed as a liar because I do not fill the common stereotypes of an obsessive compulsive, who are portrayed as being hygienic and orderly to a fault, which I certainly do not fulfil.
But every new thing I learn about my brain and the nature of disability is a door opening for me. This gives me a chance to learn why my brain works the way it does, how it works, and how I can best use that particular mode of functioning not only to lead an optimally happy life, but also to help others who may have multiple mental disabilities. Without looking up any of the numbers off-hand, I'd say we're probably more common than people give us credit for. And the more we speak out, the more difficult it becomes to continue to stigmatize and isolate us.


  1. Just my thoughts... YMMV...

    As someone who both very, very, very probably had pretty significant OCD (I was never officially diagnosed, because I chose a very unothrodox,fairly inadvisable way to do what is essentially standard treatment on myself...long story) and who has another disability as well (not ASD or a mental health disability), I can honestly say that I never considered OCD to be a disability, personally, even though it was disabling. I think the difference for me is that OCD was/is something treatable, something I could go up against and fight and fix whereas my other disability is just "me." I can't "fix" it, and I'm not sure I would want to, if I could. I likely had (undiagnosed) OCD since I was a kid on, but didn't "crash and burn" enough to actually deal with it until college. For me, a big part of recovery was, in fact, learning to separate OCD from "me," to fight against it. I know it seems ableist to frame it in those terms, but the truth is, OCD was taking over life, and by fighting it, I think I got my life *back*. I also refer to OCD and recovery in the past tense, which is unusual. I may always have some associated *traits* (e.g., a tendency towards anxiety), and relapse is possible, but I don't think I *have* OCD anymore or have since recovery. I think of my disability as part of who I am, and OCD more as a period in my life.

    Are you planning on pursuing any sort of treatment, just out of curiosity?

    Your mileage may certainly vary, and I'd interested in hearing your thoughts, even if they run contrary to mine.

    Thanks for your blog, btw. As someone who has people on the spectrum in my life, it's a very interesting read.

  2. Anon: I do not intend to pursue treatment. Although I can legitimately say that OCD (And autism and PTSD) interferes with my life enough to be legally classified as a disability, I think that my disabilities are a part of who I am, and I worry about losing a lot of my talents and unique outlook on the world if I were to pursue treatment. It's not fun to be me, but at the end of the day, I've grown used to it, and I would rather just have environmental adaptations than to try and change who I am. I'd rather just stick with using hand sanitizer, earplugs, and other measures than seek ABA or medication. But I do not judge people who do seek it out, and if I felt it became necessary for happiness, I would seek out treatment.

  3. My name is Rachael, and I also have OCD (I found your blog via Womanist Musings). Although I don't have autism, I do feel some sort of "kindred spirit" with people who have autism and related disabilities. That's not to say that OCD and autism are the same, or even close, but a lot of the experiences described by people with autism struck a familiar chord with me.

    I'm "out" about my OCD, partly because I've learned to accept it, and partly because I was diagnosed at a very young age. I got a 504 plan and teachers explained my disability to my class so that I wouldn't have too many problems.

    I guess I just wanted to say that reading this really moved me. I think the most annoying thing I get from people when I say I have OCD is, "You know, I think I have a little of that!" and then they proceed to tell me about some little ritual they always do.

    Oh, and I'm not overly hygienic or neat, either. It's an effort to keep my room even relatively clean.

  4. Hi Rachael,
    There's actually a term for people with OCD and other neurological disabilities in the autism community: Autism Cousins. So I am going to guess that the feeling of kindred spirits is mutual. :)
    Thank you for reading! I am glad I was able to move an autism cousin and fellow person with OCD.