Personal Stories

The Invisible Disease: An OCD Account

04.09.15

The first memory I have of my OCD is blurry, situated in an imprecise time in my childhood—a time that seems soft around the edges to me now, less memory than visual imprint placed on the back portions of my mind. Hazarding a guess, I was in either first or third grade, had this really terrible mushroom bob haircut and it was a school night.

I’d always had trouble sleeping. To me, bedtime was a chore, something I put off with a fervent displeasure. I timed my baths so that they would stretch out for hours. Finally, after being wrested from the tub by my over-worked mother, I’d step out of the lukewarm water with my hands and feet pruned and pink with the sheen of soap still clinging to my elbows and knees. My parents tried everything: reading bedtime stories, children’s tapes with recorded, “soothing” music and nursery rhymes, and finally, pleading.

I felt guilty about my insomnia, the fact that as soon as the lights were turned out, my mind would begin spinning like a top. I learned to feign sleep for two reasons: the guilt, and also to avoid getting into trouble. I memorized the ceiling of my bedroom, and the way the shadows, lit by the door’s sliver of yellow light, formed geometric patterns on the walls—shifting and dependent upon the amount of light let in. I got pretty good at this pretending, actually, until one day I could fall asleep gently once more. The bout with insomnia was over for now, at least.

It was one of these sleepless nights that I got out of bed and turned on the light. My mother had flipped it off in passing, and the way she’d done it had bothered me. Turning it on, I realized that wasn’t enough, either. So back off it went, and then on once more. But that was only two full sessions, and I had the startling realization that even numbers were not acceptable, but instead, suffocating. Five—yes, five—that would do the trick. Four and then one more for luck—the symmetry of it had to be disrupted. If I got it to five, I could go back to bed.

I will try my best to explain this sudden compulsion. There was no real underlying reason as to why five was the answer to my worries. But I felt a swift, strong need to get to that number for fear of something bad happening. This badness was ill defined, but nevertheless quite present in my thoughts. It was both a challenge and way to relief. The necessity of its perfectness, of this odd number, was paramount. In essence, I had to do it.

This sort of thing went on for months. Sometimes, I’d mess up and go to six or seven. When this happened, I had to start all over again. I remember standing there flipping my light on and off for over twenty minutes at one point. It had been a bad day at school, I’d gotten my card pulled for speaking out of turn. This was my relief, and dually, my penance.

Then, at some point, came the prayers. I developed a sort of mantra: an order for my nightly prayers, where each subject or person that I included had to be said in a specific sequence. Sometimes, too sleepy to follow the outline, I’d mess up or leave someone out, and I’d force myself to repeat the entire prayer again. In retrospect, this had less to do with my fearing that God didn’t hear me, and much more to do with my own peace of mind, and the assurance that the prayer was wholly complete. If it wasn’t, I feared that I wouldn’t be safe that night. The murky monsters of my nightmares would somehow find their way to my twin bed. However, at some point, this also stopped. I can’t recall the specific time or day or why it was halted, but it was, and I went on as normal. I was a child, then, and self-scrutiny wasn’t a priority or necessity, in my mind.

Around fifth grade, I started pulling out my hair. School was troubling, and I found myself in the roll of bookworm, residing in the lower portion of the social totem pole. I read on average three books a week, practiced ballet till nearly 9 o’clock three to four times a week, and I was suddenly very cognizant of how I appeared to others. As with everyone, that tight bubble of self-containment, and the lovely obliviousness of childhood, had been punctured. It had erupted quite suddenly in the fifth grade, and for the first time in my life, I cared about clothing. I worried incessantly about my hair, and why its middling length didn’t look the same—glossy, fine, little girl hair, and so adorable—as the other girls’.  I didn’t yet care much for boys, but I was painfully conscious of my own appearance, and what it lacked in comparison.

So, I took to the mirror. I’d climb up on the bathroom’s porcelain counter, cross my legs in the sink, and pull out my eyebrow hairs. Each strand felt different—I examined their texture, rolling a hair between thumb and forefinger. There were “right” ones and “wrong” ones. Some weren’t worth the pull—the sharp, dagger-like motion and tiny pinprick sensation. Sometimes, I’d bleed. This went on until I had noticeable bare patches in my once thick, brown brows. My parents also noticed, and were, simply put, horrified.

I know they asked me why I did it, and I don’t remember what I told them. Maybe that it felt good. All I knew was that time would slow when I was about to pull. I can still recall the tunnel vision, the agitated focus I could call up when performing this ritual. In those few moments, the only things that mattered were the mirror and I, and a steady, steady tug.

My parents ranged from exasperation to tears. My mother begged me to stop, and finally resorted to research on it. At one point, I wore socks on my hands to bed—a sort of last-ditch effort to stop me from pulling when unsupervised and asleep. Eventually, I did stop, but not before my friends and acquaintances asked me about my eyebrows. I came up with a lie about a candle, if I recall. Unfortunately, even with an adult’s perspective, I cannot discern if I did this as a sort of punishment, or whether it had less to do with masochism and more to do with my desire for an outlet.

I do, however, remember the relief I felt after finishing a session. I’d stare at myself, my brows pink and a little swollen, the patches that marked a disappearance of my anxiety. If anything, I can say that this was my way to maintain a concrete representation of my fears, and proof that I had diminished them, worked them out, at least for a couple of hours. Years later, I found out its name: Trichotillomania, which happens to be a subset of the overarching Obsessive-Compulsive spectrum.

They have never been as thick as they once were. I guess the systematic pulling and the resulting damaged roots eventually take a toll on hair follicles. And I still have that urge every once in a while. I have, in moments of extreme stress, taken up this childhood ritual once more. It is a desperate, embarrassing, and sick sort of thing, the purposed damaging of oneself.

My next bout of OCD arrived during the summer before ninth grade. It had been a hard year. The hardness was due to the combination of family drama, the sudden loss of innocence in regards to viewing your parents as infallible demi-gods, and the fact that eighth grade is universally accepted as “that year” amongst females. For its introductory social courses in pettiness, the first dramatic fights with friends, the discovery of cell phones and texting, and, of course, the realization that boys thought we were either “cute” or “gross”—and that these labels directly linked to going dateless to our first homecoming dance.

For this round, I had something more recognizable in terms of common OCD hang-ups: germs. I was a practicing germaphobe who took up to five showers a day, and whose hands bled, chapped and raw, the skin split into tiny crescent moon cuts that reminded me of Mars’ landscape: red and pink and puffy. Lotion didn’t do much since I’d re-wash my hands, anyways, afraid I had picked up another batch of germs by handling the bottle. I have never been a tardy person—if anything, I’m annoyingly early in most instances. But during this time of obsessive cleanliness, I started running late for just about everything. Sometimes I’d sit down in the shower and resign myself to the anxiety of getting out, of messing up, of having to re-do the process all over again. At that point, I became familiar with the concept of anxiety. It crippled me, it made me want to give up and resign myself to the fate of Bubble Girl: locked away in a large, sterile ball of merely oxygen, with the chance of dirtiness extinct.

But this phase eventually played itself out as the ones before it had done. I entered ninth grade able to take a shower in the morning and that be enough. I could wash my hands once, and not have to hesitate over the soap dispenser, with all of my senses urging me for one more scrub, my throat constricting.

It was also during this time that I realized something was quite wrong. I’d known, vaguely, that these little tendencies of mine weren’t shared with the rest of my classmates, but they were so private, so well kept and buried in the seabed of my inner-most personal life, that I didn’t feel compelled to ask any questions. As long as they were kept tucked away, what was the point of doing any digging?

The main thing that continues to trouble me is my disorder’s ability to disappear for months, even years. The constant hide-and-seek it’s played with me over my lifetime is nothing but baffling. My psychiatrist found this interesting, too. Generally, OCD stays with a person, but can vary in terms of intensity. However, the other strange thing about my case is the transformation of my impulses and obsessions. With each bout, my worries shift to something new. It’s much more common to be plagued by a familiar set, rather than my own—which change and alter. My doctor surmised that high anxiety during peaks of stressful situations is what causes each outbreak. Then, once they’re played out, they fall to the bottom once again, simmering and in wait for the next crisis.

I find OCD unique in regards to other mental illnesses in that the person afflicted can be completely aware of it, and able to intellectually perceive their compulsions and hang-ups as false. You know they aren’t real and yet they feel real. Regardless of mental power, nothing short of sheer will (and even that’s chancy), can break the compulsions’ hold. If anything, I’ve always associated this particular disorder with that often quoted, and varying line about everyone having their personal set of demons. Especially so, since I am well aware of my own, and their tangible, yet false, existence.

 I still struggle with this illness, quirk, disease, fault, weakness, defect—whatever you’d like to call it. My OCD took a hiatus during the majority of my college years, and came howling back the summer before my 24th birthday. It was a hard summer, and I should have seen the warning signs. Anxiety is directly linked to OCD. This time, it was focused on fire—a debilitating fear that caused me to check and re-check any electrical outlets, the oven, and lights. During an especially bad spell this past Fall I ended up missing an appointment, because the idea of leaving my home (and this was after six consecutive checkings) gave me so much anxiety that I felt helpless. I ended up sprawled on my floor with the lights out, watching the afternoon light grow dull and golden.

After this, I decided to get back on medication. It’s better—but still there. I feel a muted anxiety whenever I leave, now, but I’ve limited myself to two checkings. I realized this could conceivably make my life into someone akin to Howard Hughes’ own story—whose severe OCD rendered him a recluse during his later adult life. I didn’t want that. I don’t want that. And with a combination of SSRI’s and pretty pervasive will power, I’m regaining my balance.

But the point of this essay and testament, past the deeply personal history lesson of my young life, is the discussion of the disease in and of itself, and the qualities that make it, in my opinion, unique. If you passed me on a street, I doubt you’d notice anything remarkable about me—save for the bright red I dye my hair and the large, black glasses frames I prefer over more classically-styled spectacles. I would bet you wouldn’t be able to pick up on the little nuances of my OCD, partly due to my amateur actor’s ability of disguise, but more so in that this disorder oftentimes goes unseen. It is the invisible disease, and though everyone’s case differs in detail, it is largely unseen, quite undetectable to the naked eye, if you’re playing your cards right.

I believe that those of us afflicted with OCD train ourselves out of necessity to appear as unextraordinary in our habits as possible. I have cancelled dinner plans, backed out last minute on group outings, and missed meetings. I’m hesitant to call this a “gift”, but I’m rather skilled at coming up with solid, last minute excuses, just the same. This isn’t driven by the need to lie or desire for fabrication, but out of an instinctual protectiveness. I am, in many respects, merely hiding in plain sight.

OCD is a life-long thing. It’s something you have, and something, despite therapy or drugs, which will stay with you forever. It is not curable, but it is thankfully manageable in this day and age. I hate it, I do. It’s made life more difficult for me; it’s hindered various opportunities, it’s sealed my fate as someone who will never be able to claim she has the now trendy “fierce eyebrows”.

My purpose is to write this out, this tiny story, to finally make an honest document of one human’s struggle with a very real, and surprisingly common, mental disorder. There are many of us, and yet I know that we are the quiet type. Most of us, even, pass the normalcy test: we hold jobs and go to school and manage to live out our lives, experiencing both success and failure, just like everyone else. Broadcasting something that you are able to disguise kind of goes against human nature, if you think about it.

But here it is: my own struggle with something that continues to confuse and frustrate me. But it is a part of me, and I owe both my success, as well as private torment, partly to it.