Wednesday, July 8, 2009

OCD, language, and my place on the disability spectrum, part one

Today I'm responding to this post on Feministe and discussing my own experience with disability. Part one is a narrative of my experience with OCD and anxiety. Part two will be a discussion of my place between privilege and oppression and ableism terminology.

Possible trigger warning.

Though I remember being fascinated with plucking the white hairs out of my dad's beard in my young childhood, I was a happy and confident child who did not manifest symptoms of anxiety. I was an odd girl, by eight a feminist who was both attracted to makeup and ashamed of that attraction, but I had friends and did reasonably well in school, underperforming only minimally.

Something changed when we hit puberty. My slight discomfort with outward gendering because extreme discomfort. Sex was not a topic of discussion beyond the basic facts of life in my household, and so I was ashamed of finding boys attractive and wanting them to find me attractive. Though I wanted romance desperately, I did not feel comfortable existing and being seen solely as feminine or sexy. Though my own conventionally lovely and very smart feminist mother contradicted this, I was under the impression at puberty that you chose to be smart or beautiful, and I liked being smart.

The judgment was swift and immediate. In public school in seventh grade I was very suddenly on the outside with few to no friends. My former friends weren't cruel, but they spoke a language of boys and clothes and makeup that I did not and would not understand or participate in. I began to hate myself, and books were not the support I'd hoped they'd be. My grades plummeted along with my social life, but I did not become feminine or smart to resolve this.

I switched to a private school for eighth grade, and it only got worse. At the second school, I was a specific target rather than just friendless - because I was weird, because I didn't contribute, because I was a girl who didn't act like one and there weren't enough targets around. It wasn't exactly gender dysphoria, but the binary of smart or cute confounded me. I chose none of the above where I should and could have chosen both.

(I also thought I was fat. Who doesn't, when they are fourteen.)

Ages twelve through sixteeen were traumatic, and I don't remember these years very well. But looking back, I am certain that this was the beginning of my issues with obsessive-compulsive disorder and anxiety.

When I was faced with a wave of people who didn't care at public school, I began to count - the tiles, the number of lockers to mine, the number of Tommy Hilfiger logos I saw. The private school was more dramatically traumatic, but I would focus on angles, shadows, pages. I would check my messy crate over and over to make sure I had some small thing. I would check, check, check to make sure people weren't laughing at me (which they often were).

A shrink I saw told me I had ADD and gave me drugs. I couldn't concentrate, couldn't relate, couldn't regain my confidence because I had (and have) generalized anxiety disorder and OCD - there were so many confounding awful irregularities and hatred in my view of the world. But no one ever thought I had OCD - I was extremely messy, and cleanliness is the persistent stereotype of OCD. ADD was a good enough diagnosis for my therapist (who did not treat me competently in this and most other situations).

At sixteen, I began plucking out my eyebrows one day in class. I thought they were too bushy, and I was bored, and it was...soothing. When I went to the bathroom, half my eyebrow was gone.

After the next class, half of my other eyebrow was gone. I didn't even realize I'd done it.

Though I began this new manifestation of trichotillomania - probably the one I experience most consistently since that time - my hormones began to calm, and so did I. Slowly, I began to make friends, take care of myself, and stop giving a shit what other people thought. Slowly, my grades and anxiety improved.

Going to an all-women's college was a revelation (which will be discussed in greater detail in another post). As suddenly as I was on the outside in seventh grade, I was on the inside again. Everywhere I looked, there were women on the fat spectrum, on the crazy spectrum, or otherwise weird - and they were not humiliated, but instead welcomed. I had been watching the popular kids and trying to figure out their secret since age 12, and I applied that knowledge to my social interactions in college. I was confident, cool, popular. I began wearing makeup and drinking and making out with boys (contradicting the women's college stereotype) - all the things I missed out on in high school.

What's more, I had true academic success for the first time. I'd always been very smart, but never gotten great grades - I graduated high school with a cumulative GPA under 3.0, but I made a 4.0 my first two semesters in college.

I was still plucking, but it was not as bad.

I began dating my first boyfriend (and current partner) in 2006, my sophomore year, and accordingly began taking hormonal birth control. And when I returned home for the summer, things fell apart.

About three weeks after arriving home, halfway across the country from J and my friends, I woke up one morning and convinced myself I had HIV, literally out of nowhere. I wasn't think about AIDS, or watching something on TV. I didn't have unprotected sex. My sexual history was not risky. I just sat up in bed, looked out the window, and was suddenly consumed with terror at my possible status. I could not eat or sleep for weeks, until I talked to my mom about what was going on and got tested (it was negative).

I was fine for a couple weeks, until I convinced myself - with a little more provocation, but not a lot - that J was cheating on me with his ex, who didn't even live anywhere nearby. There was no basis for this in his actions at all. J has always been unfailingly reliable and trustworthy. I had not been cheated on before. But again, I could not eat, or sleep. It was like something had invaded and corrupted my mind and happiness. I didn't know if I was ever going to come out the other side.

And instead of plucking my eyebrows, I moved to begin plucking my leg hairs.

In both cases, I was severely obsessed to the point where it was disabling. This was partially because I was cut off from my social support, and it got better when I returned to school. But I didn't recover peace until a friend convinced me to throw away my hormonal birth control.

A year later, after many different crises related to me convincing myself I was pregnant despite consistent use of condoms (pregnancy is one of my OCD obsessions), I decided to try the NuvaRing. Immediately, the obsessions came back. My sex drive also plummeted, and I got a helping serving of uncontrollable anger (true story: while on the NuvaRing, I threw and broke my phone in a fit of fury over a lost puzzle piece.)

Again, I went off of it, and all the symptoms lessened significantly without disappearing completely.

In December, we had our first and only condom malfunction in three years, and I took Plan B. Soon after, I returned to Kansas for the first time in two years. It was a great trip, and the plan B worked, but in January the obsessions came back in a major, disabling way for the first time since that awful summer in 2006. OCD violated my mind again and again, and I couldn't have a coherent train of thought in any context.

Thanks to therapy, recognition of the issue, and care for my body, it's calmed down since then. I've learned to distinguish and label OCD thoughts, to wait to act on compulsions, to calm myself. I've learned to treat myself better, to get sun, to exercise, to eat well. I've learned to share my struggles with my partner. But January through March of this year were terrifying.

Barring unprotected rape, I probably will never go on hormonal BC again, no matter how many doctors push it at me. I'm using a diaphragm now in case of condom failure (more on this later).

And usually, my mental functioning is fine - a little trich, but not too bad, a little obsessive, but not too bad, a little compulsion, but not too bad. I might pluck out some pubes before I stop myself, or invading my partner's privacy to check and make sure he's not texting other girls, or drive back home from work to double-check and make sure the coffee pot's not still on. But I know what these harmful and counterproductive actions are - obsessive-compulsive disorder. And slowly, I'm lessening my dependence on them and cha

It's not disabling, but it's not neurotypical...

Part two, on terminology and identification, is here.


  1. Hey- thanks for sharing this about yourself. I think a lot of girls out there may have similar problems to varying degrees, and its nice to see a strong feminist share hers. It strengthens us all when we are honest.

  2. This comment has been removed by the author.

  3. Thanks for the kind word, Valerie. It was difficult to work up the courage to share this, and that means a lot.

  4. Wow - as someone with many of the same issues (trich, possible undiagnosed OCD, and anger issues exacerbated by other medication) who has considered taking hormonal BC primarily to aid in controlling my epilepsy (since I'm in a monogamous relationship with a girl and the other reason for taking it doesn't affect me so much), I was stunned to find out that it could affect OCD so badly. o_O Thanks for sharing your experience. I relate, but it's also helped me think about possible reprecussions -- I should probably try and just be extra careful around my period, instead of adding drugs to the mix.

    Again, thank you for being brave enough to post this. :)

  5. Thank you for this post. I have OCD and generalized anxiety disorder, and intrusive thoughts have had major negative affects on my life. I don't mean to sound like I'm glad you have these disorders, but it's nice to know that I'm not alone.


    Seriously. With some detailed variations, your overall experience describes my experiences so well. I have been wondering whether or not to see someone for these things for years, but after reading this, I feel like I at least understand things more.

  7. Check out the book MORE, NOW, AGAIN by Elizabeth Wurtzel, although as they say, may strongly trigger. (Her drug addiction started her plucking, then the plucking took on a whole life of its own.)

  8. Another book that explains these kind of obsessions that we develop when very young, is WASTED by Marya Hornbacher. (anorexia)

  9. Hi,

    I'm editor of the member's magazine of the Danish OCD Association, and I'm trying to find out who painted the painting you have used in this post. We would like to use it on the cover of one of our publications - but of course without infringing copyrights:-) Could you help me out?

    Stig Andersen


Note: Only a member of this blog may post a comment.

Blog Widget by LinkWithin