This is one of many True Story interviews, in which we talk to people who have experienced interesting/challenging/amazing things. This is Sarah L's story.Can you tell us a bit about your background?
I am a college student raised and currently living in the Washington DC metro area. I have two amazing older brothers. When my oldest brother was young, he showed some symptoms of OCD but grew out of it, so when I started showing symptoms as well, my parents decided to wait it out.
For those of us who don't know, could you tell us a bit more about OCD?
Obsessive Compulsive Disorder is an anxiety disorder which causes the affected person to feel uncontrollable compulsion to act a certain way, whether through ritualized behavior, tics, repetitions, or undesired thoughts. Sometimes people joke that when they are neat freaks or have a quirk or two, they have OCD, but it is in no way a "fun" or desirable disorder. Oftentimes the rituals one does are pointless, time-consuming, and cause anguish, but if they're not completed, one feels an overwhelming sense of guilt or fear. For me, my OCD included facial/breathing/bodily tics; obsessive cleanliness; washing my hands to a point where they were raw and bleeding; obsessive guilt and religious repetition; other repetitions which involved touching/doing things multiple times until it "felt right."
How old were you when you started to notice that you had compulsions that others didn't?
I was seven years old when I began having breathing and facial tics. I would sniff my nose every few seconds, blink one eye, make strange sounds. When other kids or parents asked about it, it was very embarrassing, but I couldn't stop.
When did you get an actual diagnosis? What sort of treatment were you prescribed? How did it work for you?
My parents took me to several pediatricians, but none of them seemed to have any explanation for my symptoms. They seemed to look at it as a type of cold that I needed medication for, rather than a psychological disorder. Back then, I don't think the diagnosis was as common as it is today. I didn't even know the diagnosis was an option; I just thought I was a freak. I don't remember exactly when I connected the label of OCD with my symptoms, but I do remember it being a huge relief.
My parents were staunch believers in the idea that one should not rely on medicine as a single answer, so while they were supportive when I needed a shoulder to cry on, they didn't resort to medicinal help. I think the worst phases of my OCD has passed, so I guess in retrospect, I'm glad I'm not on medication, but there was a time when I think it would have been helpful.
Can you explain what it feels like when you're going through an OCD episode?
The obsessive guilt I had was brought on by a voice in my head that I didn't feel I could control. I could sometimes drown it out with distractions, but it felt like I was battling myself. Most of the time, though, it's a physical compulsion.
When I was younger I used to feel that if I didn't do this or that, something really bad might happen. For instance, growing up in a religious home, my parents asked me to pray before I went to bed. I used to feel that if I missed praying for someone, then that person might die and it would be my fault. I had episodes when bad thoughts about a friend would jump into my head and I would feel so riddled with guilt that I felt like vomiting.
There were a few tics as well that I would do so much that the skin of the area would be raw or the joint would be sore. If I don't complete a ritual, I feel as if I can't continue what I'm doing; feelings of anxiety and great discomfort fill my body. The tics are at a point where I don't realize I'm doing them, but if I try to consciously stop, I have trouble breathing.
How have the people in your life reacted to your diagnosis and your episodes? Is your OCD something that's obvious to most people that interact with you?
My parents have been there for me from the beginning. However, they are both of the mind that by accepting the diagnosis of the disorder and taking on the label, I am giving it more control over my life. They encouraged me not to allow my compulsions to take over. While to an extent I disagree with the way they handled it, I'm also grateful that OCD doesn't rule my life now, and I think my parents' belief that I could fight the compulsions helped me get past a lot of the worst symptoms. My close friends were also amazing when I was going through the worst of it. Middle school was particularly difficult, and when people made fun of me because of the "weird faces" I made, my friends stood up for me. They were also wonderful, because they never asked about it. It felt humiliating every time someone brought it up.
Today, most of my symptoms are not noticeable to someone unless they spend a great deal of time with me or are sitting next to me in a quiet room for a few hours. However, when someone notices and asks me about it, I do feel embarrassed, as if there's this secret part of me that someone has uncovered.
How have you managed your OCD? Do you feel like it's under control now?
While I've stopped doing things like obsessive hand washing and guilt to the point of feeling sick, I still ritualize and have tics. Sometimes they pop out of nowhere, but some of them I have been doing since I started having issues in second grade. The tics I have today, while annoying, never feel overwhelming and are barely noticeable. I still ritualize, but I feel like I have a certain extent of control over it. It doesn't make me feel hopeless any longer.
Popular culture would have us believe that there are "benefits" to having OCD - being really organized, very detail oriented, etc. Has that been true for you?
Personally, no. While I might be in a Blockbuster and start organizing dvds so they're perfectly symmetrical and straight against the shelf, my own room is a mess. The things I obsessed about were never admirable. I remember one time I cleaned a house at which I was babysitting of all the hair I found on the floor, because I was afraid it might be mine. The things that people with OCD tend to obsess about don't make sense. Of course, I'm sure there are those with OCD who keep their things neat to a fault, but I never got that benefit, and I don't know anyone with OCD who actually enjoys the obsession.
How do you feel when you hear someone jokingly refer to themselves as OCD, when they're really just clean or organized?
It does bother me a little. The disorder is characterized by ridiculous obsessions and compulsions, not reasonable ones. Anyone who has suffered through the agony of feeling unable to control his own thoughts will tell you that it is not a joke. Hating germs and being conscious of when to wash your hands doesn't make you obsessive compulsive. It is only when you feels it is negatively affecting how you live your life that it can be characterized as a symptom of OCD.
What advice would you give to someone who's struggling with OCD? Or to those of us who know someone with OCD?
Don't give up! Find a support system. My parents encouraged me to never allow the disorder to control my life, and I am now happily living without the feelings of hopelessness I used to have. I also believe that it is a disorder that can be controlled without using medication if you so choose.
The friends who have best handled it are the ones who treat my OCD matter-of-factly, like it's just another facet of my personality. Being a listening ear and a shoulder to cry on when things feel overwhelming really makes a difference as well.
Do you know anyone with OCD? Any questions for Sarah L.?
But you know what? All that worry was for naught. It was fantastic! Absolutely, 100% fantastic.
