True Story: I Have OCD

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.?

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  1. meliasaurus

    I've taken OCD way too lightly before. I promise to not jokingly say that other people who are strangely clean are OCD. I never thought how rude it was.

    I have ADHD and anxiety so I definitely understand what it's like to not be in control of your thoughts.

    I am so very impressed that you have managed to over come everything it makes you a hero in my eyes.

  2. Kelly

    Thanks for making this post! I had OCD as a kid too, and your description of the obsessive guilt fit me to a T. It's nice to know someone out there has been through the same stuff!

  3. Anonymous

    I had OCD growing up, too, and agree with Sarah's descriptions of it. If she hasn't tried it already, I wanted to suggest that she look into behavior modification therapy to help her with remaining compulsions and tics. It has helped me recover almost completely and I am really grateful. I am 28.

  4. LizBean

    Ask ridiculous as it sounds I didn't know what I had until I saw a true life episode on MTV years ago. Yup. I freaked out that finally I had an answer to what I was going through. Before then I had told my parents about it and they just laughed. They didn't take it seriously. I'm glad that for the most part I grew out of it. It started out with my blanket facing a certain direction when I slept as a kid, to touching things until like she said, it "felt right". Like touching all the fruit in a basket or touching all the slices of pizza until i felt comfortable to pick one. At some point it was getting ridiculous and I started to fight the voice in my head. I would just grab the fruit or whatever and run away singing a song in my head or trying to think of something else quickly to make the "guilt" go away. I couldn't think straight or was kept up at night because I had to breathe in patterns of 4 (in, out, out, in) but then those combination's became patterns themselves! (in,out,out,in -out,in,in,out- out,in,in,out- in,out,out,in) It can drive you crazy. Thankfully I've gotten over the worst of it but I still see it a bit in other forms in my life…

  5. Marthe

    Great interview! I really enjoy learning about parts of life that I (luckily) have no experience with.

    And thank you Sarah for opening up so that we can learn.

  6. Vanessa

    Thanks SO MUCH for doing this interview. Not to plug my own blog, but I just wrote a "letter" to people who claim to be "so OCD" very recently. I also suffer from OCD in the form of several self-harming behaviors and intrusive thoughts and it really bothers me when people take the disorder so lightly.

    Letters to People Who Are "So OCD"

  7. Enna

    Holy heck this could be me saying all of this. Great post. I am glad you touched on society thinking about the "benefits" of having OCD – people constantly joke about how it must be awesome to have such a clean house all the time, and really, that's not at all what it's like. It's more like I have this compulsion to touch the stove until I feel like I am ok, and the dishes are rotting in the sink because I just need to touch the stove just a FEW MORE TIMES.

    Seriously, excellent post!

  8. Alli

    I had heard about OCD plenty of times before but what made it the easiest for me to understand so far was this metaphor given in one of my education classes by an OCD student; they compared the compulsion to an itch – you could choose not to scratch it but you'd be distracted and it wouldn't stop bothering you until you scratched it and satisfied the urge… Only, OCD was worse and harder to not "scratch". Since I don't have OCD it was nice to have something (even if not exactly comparable) to understand it just a little bit better. Thanks for sharing your story!

  9. Anonymous

    Thanks for sharing your experiences. I just wanted to add one little bit about medication. A brain with OCD is physiologically different from a normal brain. Medication can help bring it back into balance; it's not just a quick fix. Think of it like diabetes: some people with milder forms can get by with losing weight, exercising, and eating carefully. Others with more severe forms, will die without insulin injections.

    It's fantastic that you're able to manage your OCD without medication, but I just want to reassure any readers that they haven't "failed" if they find that they need it."


  10. Rachel

    Thanks for sharing your story! I too have OCD, but only the obsessive part presents itself. I have obsessive thoughts that I can't control; if I don't monitor my thoughts my brain starts bringing up all the cringe-inducing moments I've ever had, at a flooding rate. It got so bad when I was twenty that I had to walk home from class hitting myself on the head and repeating "Stop. Stop. Stop" out loud. I looked totally nuts.

    I finally got diagnosed at age 20, and went on medication, which took away about 75% of the thoughts. I'm off the meds now, and the frequency of the obsessive thoughts is less than before I went on meds, but more than when I was on meds. It's worse when I'm in very stressful situations. I probably will go back on meds in the future.

    The thing that sucks about it is that when I told my friends, like my dearest friends, they laughed in my face and didn't believe me because I'm not the typical "True Life: I have OCD" type case. My OCD is pretty much invisible, except when I'm hitting myself on the head to make the thoughts go away. Because of that reaction I got from my friends, I almost never tell me people about my disorder. My friends have since apologized once they realized how bad it was, but I still know that if I tell most people I have OCD they won't believe me because I don't wash my hands 40 times a day.

    Annnnnddddd I didn't really plan on typing all of that but there it is! Thanks for letting me share.

  11. Anonymous

    Thanks for sharing your story. I live with someone with OCD. It's not easy. Your article makes me understand more about this condition. However, I find it harder to cope by the day…

  12. Anonymous

    yes i have ocd but with the help of SSRI medicine now i feel better and very happy

  13. 143

    Thanx for sharing your challenging life,which you cope with OCD.I am also one of the OCD sufferer.when doctor told me you are suffering from OCD,I thought that it is (O)ut of (C)ontroll (D)isease. I want to say that its not a problem but it is power,if you think +vely.god bless you and offcourse to me.

  14. Anonymous

    I've been OCD from the day I could talk. I remember obsessing over death, vacuuming, paper, being kissed on the head and the air touching my hair follicles, germs, cleanliness, my feet, time, my thoughts, and a whole whack of other things. I also used to have a serious phobia of vomit and had to go on antidepressants when I was 10 because I couldn't eat or leave the house and was living in terror of germs. I thought if I did certain things, vomit would go away, but if I accidentally saw it on TV or somebody I knew got any kind of sickness, I would get very suicidal. I also tried antipsychotics, but I'm just too scared of nausea as a larger side effect. My OCD has gotten worse as of late. I never go to bed without performing a four hour cleaning ritual, but I frequently can't sleep and end up cleaning for days without food. I left the house and ate a frozen yogurt today, so I guess that's a bit of an improvement. I've been too scared to leave the house. A couple of weeks ago I stood outside of my door for 38 seconds and it scared the hell out of me. This disease has taken over my life, and I would give anything to make it go away.

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