My OCD Story
When my OCD became significantly difficult to deal with at 15, I went online to find more information about my particular flavor of obsession. I was a doofy 15-year-old with no frame of reference for what I was going through, but reading people's accounts of their life with OCD, and how they had worked to manage the same obsession I was dealing with, gave me glimpses of hope - not only had someone out there gone through what I was going through, but they actually had gone through it. Past tense.
But these accounts were not breezy success stories. Treating the OCD with medication and Cognitive Behavioral Therapy (CBT), as most of the people in those accounts did, took time and lots of effort. And the stories emphasized that the goal wasn't to exactly be OCD-free (is there such a thing?) but to be OCD-okay. I was so unhappy that the hard parts of their stories didn't worry me - I was willing and eager to do whatever it took to feel OK. The fact that these stories offered hope that there was something you could do, however difficult, was wonderful.
In 2005, I decided to put my own OCD story online, too. Parts of this page come from things I wrote as far back as 2002. Since late 2007, any update I've added to this OCD page has been a positive one. My story is, basically, like the ones I read way back when: I struggled, I worked hard, and ultimately I feel pretty darn good. I'm grateful to be at a point where I can write about the struggles and hard stuff I've been through - past tense! (I'm realistic, too. My OCD is not "gone." It's something that I'm mindful of and work on to keep hard times in the past tense.)
I'm also so grateful to the people whose OCD stories gave me such hope when this was all beginning. I share my own OCD story because of the possibility that someone struggling with OCD might come across it and, maybe, feel a moment of comfort like I did when I read others' stories in the early days. I don't think my experiences offer any more insight into the disorder than other experiences, but reading about them might help someone a tiny bit. That would be cool.
So, here it is: my OCD story.
- What this whole thing is about.
- Let me tell you a tale...
- When this whole thing started.
- "Not that there's anything wrong with that!"
- And so it begins...
- Things get tough.
- Cognitive Behavioral Therapy
- Things get serious, and I get to work.
- (Relatively) OCD-free
- A good year.
- ...And back to square one
- Things get really tough.
- An end...
- Trying to move forward.
- ...And a beginning
- Change is good.
- The rockiest bottom of them all
- Hard times. Very hard times.
- A few months on
- One year on
- A little wisdom.
Updates & Reflections
- Four years on - March 2011
- Five years on - April 2012
- Seven years on - October 2014
- Eight years on - June 2015
- Ten years on - February 2017
Until my sophomore year of high school, at 15 years old (I was diagnosed at 7), my OCD was more of a nuisance than something bad. Little obsessions would pop up now and again, but they would eventually wear themselves out. However, at 15, I began suffering from an obsession that would shape the next few years of my life.
Before I get into talking about the obsession and all that, I should explain how it has shaped my life. It has affected my life in both negative and positive ways. Suffering with it has been, obviously, a negative effect. But, my acknowledgement of my determination and strength in suffering with it and fighting it has been a positive effect. It has helped me to realize that my life isn't OCD, and OCD isn't my life. But it is a huge part of my life, so sometimes that distinction gets a bit blurred!
So, the obsession. With OCD, anything can be obsessed over. Anything can make you feel awful. My obsession is very common among people with OCD, but due to its easily misunderstood nature, we don't tend to go around shouting about it.
A sexual obsession that centers around the fear of being homosexual. (Sometimes it's talked about using the slang abbreviation "HOCD" - Homosexual OCD.) The constant questioning and ruminating over thoughts like "What if I'm gay? What if I actually like the same sex? What if everything I've known about my preference throughout my life has been a huge lie? What if I'm repressing desires? What if? What if? What if?"
You may read that and think, "Closet case." Or, "Confused."
"Homophobe." Did that run through your mind?
You might be right about all of these things, if in fact I were gay. If, in fact, the problem in question was sexual orientation, and not a disorder.
I've thought about all of those things too. I believe it's very important to embrace your sexuality and be proud of it. I think it's shameful to be homophobic.
What I just wrote was logical and reasonable. It made sense (I hope!). OCD takes no notice of logic or reason. It thrives on irrationality and implausibility.
Let me tell you a tale...
I can remember this whole thing as a timeline. It starts right after the first Harry Potter movie came out (so, November 2001, to be precise). I saw the movie and just went gaga for the "Professor Snape" character. After about a week or so after I lost my silly teenage heart, that initial feeling faded. I thought, "Yep, I'll go back to not really caring like that about him sometime, like with other guys I liked before. Like I'm gay or something! Oh. No. Gay?" Yeah, that's how it started.
Gradually, I became more and more obsessed with the "am I a lesbian?" thing. I started having to do some rituals to ward off the thoughts about being gay (saying words in certain patterns, including "I'm not gay, I'm straight, I'm not a lesbian..." ad infinitum), but they weren't interfering with life (yet).
I became more aware of my reactions around women (mostly women on TV and in magazines, but also "out and about" - pun intended!) and men - who do I like looking at more? being around more? thinking about more? Over winter break, when we were decorating the Christmas tree, I was working on the computer for a minute. I opened a picture I had saved of "Snape" for (and I didn't realize this at the time) reassurance that... here it comes... I wasn't gay. Then I couldn't close the damn thing. Open, close, open, close, open, close - ah, I had the "right" thought, now I can go decorate the tree. WAIT. What if I was thinking something about being gay? Better open and close it again to make sure I'm not gay.
Why that fear? I dunno. Why do some people with OCD have contamination fears? Why do other people with OCD have religious obsessions? It just is. For some reason, the idea of "turning gay"' or all of a sudden finding out that you're gay is the scariest thing ever to a person with that particular obsession. Who knows why?
It's not homophobia, honestly. Take a contamination obsession. You know you aren't actually dirty. Deep down inside you know you're clean. But you have a contamination obsession, so you just can't be sure. For some reason, your obsession focuses on cleanliness. The "what if I'm gay?" obsession focuses on your sexuality.
And so it begins...
My obsession came to a head at my grandparents' house the day before New Year's Eve (a few months after Harry Potter). I "spiked" - that is, I had an anxiety attack brought on by thoughts related to the obsession. That's when I realized I had an obsession.
The rest of the school year was... interesting. I mean, I was miserable, but I was able to function. I got excellent grades and kept up appearances, even though I was living in my head. That summer was awful. Among other difficult routines, I would try to get into bed, but I couldn't bring my feet up into the bed unless I was thinking of something not associated with my obsession. Images related to my obsession would come flooding into my mind when it knew that I just wanted to go to bed. I would lay there, half in bed, half out, watching TV for hours. Then once I actually got into bed, all of me, not just my top half, I would start the nightly ruminations. I would force myself to imagine all manner of graphic '"stuff" with women and men and compare and analyze and analyze and analyze. Do I like that? What does this mean? Blah blah blah? I was a prisoner in my own mind, unable to let myself relax to fall asleep until I had reassured myself that I had "counteracted" the obsessive thoughts. I can't think back on those nights without wanting to cry. It was a hard time.
The first half of my junior year was miserable. I still cannot understand how I was able to keep going. I had lost all hope in everything. I was weak, emotionally and physically. Mentally, I was exhausted. Something kept me going, kept me from just throwing up my hands and saying "That's it! I'll just be miserable for the rest of my life! That's all there is!"
That fall, at 16, I started cognitive behavioral therapy sessions. I went through a week of intensive therapy early that spring, in February. I did everything (getting into bed, for example) that previously had been next to impossible to do without ritualizing while thinking about my obsession. By "thinking," I mean that instead of avoiding the obsessive thoughts by ritualizing and ruminating, I confronted those thoughts and welcomed them. I walked all around the house, thinking about my obsession, relishing the obsession, forcing it to just try and stop me. I got my legs up into bed. I watched television without ritualizing. I lived.
It was scary at first, forcing myself to think about exactly what I had been trying to avoid all that time. But I knew by then that it was the only way to become me again. I was proud of myself. I had done it. I was no longer hampered by my thoughts, no longer compelled to ruminate, no longer a prisoner. I was free.
My senior year of high school was bliss. I was me again, and I had a fantastic year. My OCD was only there in the background, something to brush off if it dared try to bother me. After two years of hell, I relished just being able to look at men and women and not analyze. I particularly relished being able to look at men and simply adore them without thinking "Well, you're just pretending, you're really gay." I loved being able to look at women and think they were pretty without fearing that that meant that I was gay. I loved feeling confident about myself again - I had beaten the OCD into submission and I was back to being myself again.
So, I graduated in 2004. I was not affected much by OCD that fall, and didn't expect to be. Then, the week before Christmas, I woke up and had an anxiety attack. That obsession I went through CBT to beat? Yeah, it was back.
This time around, it got so bad that I had to defer my first semester of college. I was truly suffering. I got back into therapy as soon as possible, but I was still in a very bad way. It's a very, very scary thing to be frightened of your own mind, to be frightened of what next thought would cause an anxiety attack. I hit rock bottom during early 2005. I mean rock bottom. I was in such a bad way that I experienced depersonalization. It's common as a full-fledged disorder, or as a one-off type thing, which is what I had. I have never felt anything as bizarre and frightening as that sensation.
I took a summer course to prepare myself for my first semester of college in fall 2005. I was in therapy with my therapist until October, I think, which is when my parents made the decision to take me out of the therapy and take me in to see my psychiatrist.
I was not making any improvements despite doing my CBT techniques and exercises in earnest and with determination to heal. I hit another rock bottom when I fell asleep on campus while ruminating in a bathroom stall for about an hour (I woke up in time for my next class, though). OCD ain't pretty, folks.
I was extremely irrational. My psychiatrist talked with me and heard the way I was thinking and how my thoughts were processing and told my parents, "It's time for the big guns."
I was started on Abilify (in laymen's terms, an anti-psychotic) that October. My psych gave me "work" to do, techniques that were contrary to what my therapist had drilled into me. The strategies my therapist had been employing this time around seemed to have exacerbated the obsession.
By some sort of miracle, and I mean that sincerely, the Abilify took effect within a month. I cannot tell you how amazingly better I began to feel. No more fearful thoughts plagued my mind. I was able to think rationally and logically, and I loved it.
That didn't last long. That spring, in March or maybe the beginning of April, I crashed again. My psychiatrist had taken me off my SSRI and the Abilify sometime during the last two months because of difficulties with side effects. So unsurprisingly, I didn't do so well without my medication. And though I've said it before, I hit yet another rock bottom.
I withdrew from all of my spring semester classes except one. I finished that one class with an A- (yay!) and a few shreds of sanity left. My psychiatrist tweaked my medications that summer and I struggled to get better. I cancelled my enrollment for the fall 2006 semester and planned to go back in the spring.
My parents began looking for a new psychiatrist for me at the beginning of the summer. We felt we needed a new perspective. My mother got a consult appointment with the head of an OCD clinic at Johns Hopkins University, but that appointment wasn't until the end of August.
That summer, I was put back on my meds and sort of just coasted along, not doing very well but not in a fetal position. I had an informative and helpful consult with a different therapist in the middle of the season and that lifted my spirits quite a bit. The end of August came and we went to Baltimore for my Johns Hopkins consult.
The consult lasted four hours as the psychiatrist took an exhaustive look at my history with OCD and my history in general. At the end of the session he confirmed that I was indeed suffering from a particularly bad bout of OCD and that it was very possible to recover and go on to have a wonderful life. He agreed to take me on as his patient and though I was still feeling pretty miserable, I was buoyed by the hope my new psychiatrist offered me.
We began building my SSRI up that fall and the months went by fairly uneventfully. I still had to withdraw from the spring 2007 semester due to some medication issues, but my healing continued... until I hit yet another big bump in the road.
Every time I hit "rock bottom" before, I thought I'd never be so low ever again. February/March 2007 proved that I had been wrong.
I was doing relatively OK during the beginning of 2007. My psych, after talking with my internist, decided to take me off of Abilify as there were concerns that it was causing troubles with my heart. As I was coasting quite nicely, we thought that maybe I would do all right without the Abilify.
After I had been off the drug for about a month, I hit rock bottom again. This time, though, my obsession had "morphed." I was no longer worried about being gay. Oh no, that was out the window. I had a new fear.
This one is even more potentially offensive than the being gay one was/is, and so I won't go into it, because I have no idea how to explain it. I started having suicidal thoughts (not thoughts of actually doing it, but dark thoughts all the same) and was so damn depressed. I felt like hell and I thought it would never end. I mean, I was in a very dark state of mind that I had never experienced before. I felt, "Why has this happened again? Why have I crashed again? How am I supposed to heal from this? I hurt so bad, I can't imagine ever feeling like myself again." I felt numb.
I saw my psychiatrist, and he once again gave me hope. He asked me if I wanted to go to the hospital, because of the suicidal thoughts. I know there's nothing shameful about being hospitalized at all, but you only ever hear about people who are really struggling being hospitalized. It sort of hit me then just how ill I was. I said no, I didn't think I needed to go, and because of the rather mild nature of the thoughts he supported me in my decision. He talked with me and tried to get it through to me that it's all just OCD, that it will get better, that my new fears are still OCD and not, like I was convinced in my head, a "real" thing to be concerned about. At the time it was hard for me to believe that things would improve because I just hurt so bad, but I was willing to believe my psychiatrist because he's a smart guy.
Now back on the Abilify, I have seen a great deal of improvement since my last appointment with my psych. That dark state of mind is gone. Those dark thoughts are gone. That hurting? Gone. I'm not better, I've still got quite a ways to go.
But this time, I really think I'm healing. I'm not just 'getting better' like I did the first few times. This time, I truly feel like I am recovering my mental health.
Those rocky bottoms never have to happen again. I don't have to feel that bad again. This time, I know that I can never truly get rid of my obsessions. You can't get rid of OCD. But I can learn to not be controlled by my disorder. I can own it. I can realize that my fears and worries are part of a disorder and that I don't have to pay attention to them, I don't have to spend time analyzing and ruminating.
I can, to put it simply, live.
Updates & Reflections
Since "the rockiest bottom" last year, I have gone back to school - and enjoyed it, too! I've made "school friends." I love (well, perhaps love is exaggerating it a bit!) working on papers and coursework because with each assignment worked on and completed, I gain back a little bit more confidence in my abilities. I have a lot of hope and optimism about the future - both years from now and just hours from now. I enjoy things so much more and truly understand the meaning of "don't sweat the small stuff." My mantra is "Happiness is an option" (thanks, Pet Shop Boys!). I have my OCD pretty much under control - as under control as it can be. I've accepted and understand that I'll never really be free of OCD - but I also understand that doesn't mean I have to suffer.
It's been awhile since I updated this page - but mostly because I've been doing well! I'm still taking it easy with school, taking a couple classes a semester. I'll graduate within the next thirty years or so! ;) In any case, I'm loving my classes and I'm getting pretty nifty grades, if I do say so myself.
My OCD? It's still there (duh), but largely unobtrusive. Medication tweaks over the last six months have kept it even more under control. Life is pretty cool, all in all. Happiness really is an option.
Everything's pretty much the same as this time last year - school's going great, and so is the ol' OCD. The only not so cool thing going on doesn't have anything to do with OCD at all: I was diagnosed with MS in July 2011. It's always something, I swear! :) It's no fun getting that kind of news, but I'm OK. Even more than before, I really embrace that whole "happiness is an option" thing. I seek out feeling happy and enjoying the big stuff and the little things. All these years on from the worst days of my OCD, and even with a new icky health thing going on, I continue to err on the side of happy.
D'oh! More than two years have passed since my last update. Happily, I have only good stuff to report. School is going beautifully: last semester I was an undergraduate TA for an English course, I'm currently interning at a scholarly journal and in the university's Special Collections archives, and - drumroll please! - I'll be graduating with my BA in History and Women's Studies in December 2014. It's all coming together for me, whatever "it" is!
And that ol' OCD is doing just fine. That new MS is, too, even if I still do feel a bit of a sting sometimes at the thought that I, well, have MS. But! Look at this page. Look at the stuff I've worked through. I am a pretty determined kinda gal, and I know that happiness is and always will be an option. I've got this.
I did it! I graduated from the University of Maryland with my BA in History and Women's Studies! And I was asked to give the undergraduate speech at the joint departmental ceremony for Women's Studies, American Studies, Comparative Literature, and English! And I was elected to Phi Beta Kappa! I can't even begin to articulate how amazed and proud I am.
Me! December 21, 2014.
I'm amazed because for so long, simply getting to the point of graduating was a far-off hope. I navigated my academic career tentatively and with caution. I always had the specter of my troubled days of deferred and withdrawn enrollments in the back of my mind. That meant that however wonderfully I was doing, I took careful steps - only a couple classes each semester, not taking on too much at any one time.
I'm proud because amidst all my caution, I worked hard and diligently in my classes. I got so much out of each one and genuinely enjoyed the heck out of 'em. I often said that I wished I could be a student for life because it's my favorite thing ever! (I still feel that way!!)
I'm proud because when I was diagnosed with MS in July 2011, I still went to work the next day, at my summer student job in the university's History department office. I took that fall semester's classes and loved them. In Spring 2012, my incredible advisor and I constructed a plan to graduate in the next few years - slow but steady and possible and within reach.
I'm proud because I declared my second major in 2013. That fall, I interviewed for and got an internship with an academic journal for Spring 2014. And then I was asked to be an undergrad TA for a professional writing English course's Spring 2014 semester. I felt ambition gradually develop alongside that caution with which I still approached school and my future plans. A kind of cautious ambition!
I'm proud because my graduation from college marks not only an academic achievement, but also - especially - a profound personal accomplishment. If you had told me when I began at UMD - a lifetime ago! - that I would not only graduate but also speak for my class, I would not have believed it. It's still kind of a wonderful shock!
I'm proud because... well, I did it. After all this time and all this crud that got in my way. On the day I gave my speech and walked across the stage as a UMD graduate, the only letters that mattered were "B" and "A." OCD (and MS)? Footnotes to the main story - me celebrating my graduating class, and earning my Bachelor of Arts degree. Footnotes undergird and explain and expand on the main story. But they aren't the main story.
I'm thankful that for a long time, my main story was about finishing up at UMD. Today, my main story is about figuring out what I want my next chapter to be! My footnotes are already there, of course, but as corny as it sounds, the main content - my main story - is yet for me to fill in. How cool is that?!
Whoops, I didn't do one of these for 2016! Well, to recap - I turned 30 (!!!), the ol' MS is still no biggie, and the end of the year closed out really wonderfully because I got my first post-graduation job. I'm a registration assistant at a community college and I love it! On a more reflective note, it's now been 10 years since "the rockiest bottom of them all." I'm light years away from then - my OCD is doin' fine! - but I will always keep the things I learned from going through that troubled time (just how strong I am, for one!) close at hand. I've changed a lot this past decade, of course, but my core determination and earnest drive to move forward and to work hard to get well - those things haven't!
Kudos to those of you who made it to the end of this. You win the internets.