This is a Guest Blog by my dear friend, Bobbi. The week of October 11th through 17th was Obsessive Compulsive Disorder Awareness week. But how many of you actually knew that? I have my version of someone “on the outside of OCD.” But as I was writing it, I found that I wanted to know more of her story. From the beginning. So I asked her to please write it out for me.
To her, it’s “whining.” Yet it’s deeply personal and she is afraid to let her parents read it, because sometimes, they made her problems worse.
Most people who read my blog are parents and I know we would do anything for our children. But even she didn’t know what she had because she wasn’t aware of what OCD was. And most of us, when we think OCD, we think of Monk. Needless to say, that is Hollywood’s version and it doesn’t delve into the true story about what is going on inside the person with OCD’s mind that is causing them to behave that way. According to the International OCD Foundation, about 1 in 100 adults have OCD. So in the United States alone between 2-3 million people suffer from it. And in reality, OCD is not funny or humorous.
If Bobbi’s story helps one person out there discover they have OCD or that someone they know has OCD and gets them to seek treatment for it, it’s worth it. I have seen first hand how debilitating, frustrating, and scary Obsessive Compulsive Disorder can be.
Here is her story.
Three and a half years ago, I sat in a chatroom for anxiety and panic. I was a little older than seventeen, and I’d been a member of the chatroom for almost a year. I had every right to be there. I had panic attacks. I had been diagnosed as having GAD – generalized anxiety disorder. That alone qualified me for a spot in the room, which served people with all kinds of anxiety disorders.
The GAD diagnosis, which I’d received about a year and half earlier, never felt quite right. As I sat in the room, I tried to describe something to the people in there.
“Have you ever had a picture in your mind that you couldn’t make do what you wanted it to do?” I asked them. “Like, say you’re picturing yourself writing. But in your head, you can’t make the pencil do what it’s supposed to do. Instead of writing, you picture the pencil stabbing you, and you have to keep imagining it over and over again trying to get it right?”
It was the best I could to describe the thing that had been going on in my head ever since I could remember. It wasn’t always pencils. Sometimes paperclips. Sometimes doors. Balls. Toys. Books. It didn’t matter what. I’d have a picture in my head, and something would go wrong with the scenario. And then, I’d have to think that scenario over again, trying to make it right. Only… I never could make it right. I’d get more and more frustrated with myself, with the image in my head that I couldn’t make go away, until I’d start to feel short of breath.
After offering my description, a long-time chatter, Angel, asked “Do you have OCD? That sounds like OCD. I do that all the time.”
No. I most certainly did not have OCD. Surely someone would have figured that out before. Nevertheless, I looked up the symptoms. And the more and more I thought about it, the more it made sense.
- When I was 2 or 3, I had a deep and abiding love for Winnie the Pooh. I watched it every day, and I knew its theme song by heart. “Deep in the hundred acre woods… where Christopher Robin plays…” Sitting out on the front porch of our house with my parents, I’d start to sing it with them. Until they messed up a word. Or put one in that didn’t belong. Then I’d stop, and start from the beginning again. Once my dad caught on, he intentionally substituted “poop” for “Pooh” in the chorus of the song every time we’d get there. And, without fail, I’d start from the beginning again, growing more and more frustrated.
- When I was four, and in preschool, they wanted to paint my nose red and put antlers on me for a reindeer Christmas ornament picture. Somewhere, I still have the ornament. A horrible, “gold” circle with a picture of me in the middle – a look on my face something between anger and terror with a forced smile, because darn it, they had put paint on my nose and I really really didn’t want it there.
- When I was 5, I was afraid to cross our dining room, unless I did it the right way. In my head, I saw Indians with arrows on the side of the room. I’m not sure why. All I knew was that if I didn’t cross it at just the right speed, with the right number of steps, they would shoot me. Something terrible would happen.
- Law and Order premiered the same year I did. That’s the only explanation I have for this one. By the time I was 6, I had seen more Law and Order than I had Barney. That same year, I became afraid that if I couldn’t see my parents, they had been killed and put in the big freezer in our mudroom. While my parents worked, I checked the freezer. And then I checked it again. And again. And again. Because I couldn’t be sure that I wasn’t wrong. That, in the five minutes since I’d last checked, something hadn’t happened.
- My grandparents lived next door, and I often stayed with them while my parents were gone. Several times, I snuck out of their house, and into mine through the dog door, just to check the freezer. Because I just had to do it.
- When I was 8, my dad told me to clean the playroom. I started. Three hours later, when he came back, all I had managed to do was to dump everything I owned into the middle of the floor, and organize the Barbies into a shoe holder by the arbitrary system in my head. Dad hit the roof. He yelled. He screamed. He told me to get out of the room and that he was going to throw away every toy I owned. I cried. He didn’t seem to understand that it wasn’t that I’d been disobeying him – I just couldn’t put the toys away unless they were organized, and the drawers weren’t organized the right way.
- I used to sit in my third grade class and think about all of the movies I owned. I was compelled to alphabetize them in my head.
- In fourth grade, I switched schools. Early in the year, I had lunch with a girl named Kristen. On her tray, she not only let her ketchup and mustard touch, but mixed them together to form an orangey-yellow concoction that completely turned my stomach and made me want to be sick. Food wasn’t allowed to touch. If it touched it was contaminated. And by association, she was contaminated because she mixed them. I hated her for years. She never knew why.
- I was 11 in the seventh grade, when I made the mistake of going to a church youth meeting on the Rapture. That night, I had my first panic attack. I became obsessed with religious symbols. I couldn’t walk past the Left Behind books in the Wal-Mart, or something bad would happen. If I had a bad thought, I had to erase it with prayer. With apologies. If I fell asleep while praying, I was terrified for weeks. And I always fell asleep while praying. When it stormed, I hid under my desk, convinced that the rapture was coming and I hadn’t been good enough.
Maybe… Just maybe… I did have OCD. But why hadn’t anyone realized? How, in the past seventeen years, had I not put the puzzle together? And what the hell was I supposed to do about it now?
Although there were clearly symptoms of OCD throughout my early childhood, the problem didn’t become epic until that youth group. The name for what I was dealing with was scrupulosity – religious obsession, with compulsions designed to cleanse. I had loved church as a child, but after the obsession started, I grew to hate churches. At first, it was only my own, and only if they talked about the end of the world, or the second coming. Soon, seeing a church – any church – would be enough to set me off. I couldn’t handle hearing about anything apocalyptic. It was a recipe for disaster – panic and terror and hiding under my desk, where I spent a lot of time for the next few years.
Once or twice, I talked to my parents. But for the most part, I kept this to myself. It wasn’t the kind of thing that encouraged talking about, and most of what my parents had for me on the subject was religious doctrine. Be a good person. Pray. Things I was already doing. And that just wasn’t working for me.
I couldn’t be sure. I couldn’t know that I was good enough. And the whole idea of forever? What if I didn’t like heaven? What if I hated being stuck there singing forever?
They were terrible thoughts, but suddenly, I couldn’t stop having them. I couldn’t stop saying them under my breath. Terrible thoughts that would come to my mind, like “I hate God,” plagued me, and would have to be erased. Because… what if I really did? Then I wouldn’t be a good person.
And the cycle went on and on and on.
I’m not sure what finally broke the scrupulosity’s back that time, but I suspect that it was only temporarily replaced by a stronger obsession – one that, over the course of the three years, would render me almost completely non-functional.
Health. I was 13, almost 14, when the health obsessions started. Not terribly, at first. I worried about getting sick. About being dirty. I worried that the knot at the base of my skull was really a tumor. If I got a bruise, I worried that I might have leukemia.
At least, by that time, I had successfully identified my panic attacks for what they were. My mother had been having them for years.
Of course, that didn’t mean I was going to tell her about them. Only that I knew what they were.
The same went for the other compulsions that had started creeping into my life. Counting. Multiplying. Avoiding cracks. These things didn’t seem strange to me – I just had to do them. Repetition became a problem.
When I learned piano pieces, if I made mistakes, I had to start from the beginning. When starting over no longer made me less anxious, I supplemented with a system of compulsive self-punishments. Learning As Time Goes By, I slapped my hands red, until they hurt, because every mistake warranted a certain number of slaps before I could move on again.
I was so terrified that someone would see me and ask me what I was doing. I knew that it was crazy. I knew that it didn’t make sense. Just like the pictures in my head of pencils having minds of their own and stabbing me when they should have been writing, I knew that the compulsive hand slapping was irrational. But I didn’t know what it was, and I was ashamed of it. Like so many obsessive-compulsives, I hid it. And I mastered the song. And everyone thought I was simply a dedicated and talented young musician.
My family, for many reasons, sold our house and moved into an RV when I was 15. We had decided to travel across the country. By that time, the health obsessions had taken on a life of their own. By that October, they’d become unbearable.
The catalyst that sent me off the deep end?
I was in my first real “relationship” with a boy I’d met online several years earlier. Peter, three years older than me and a computer whiz, played The Sims – a computer game that I also loved. He had been invited to EA Games in California, where he lived, to work on a user-directed ad campaign. When they asked him to suggest others who might be good at the work, he suggested me, and EA Games invited me to California to work with them.
One day, while walking with Pete from our hotel to EA, I picked up a bird feather off the ground and stuck it in my hair.
“You shouldn’t do that.” Pete told me. “You might get bird flu.”
“What’s bird flu?” I asked.
“They say it’s going to be the next pandemic. It could kill millions.”
I took the feather out of my hair. And for the next six months, bird flu became my windmill. While I was still at EA, I functioned during the day. I worked on The Sims for twelve hours at a time, had dinner, did what I was supposed to do. I even had a good time. But every night, I went to the hotel, crawled into my bed, and commenced the obsessive-compulsive panic rituals. I had to watch the news. But I didn’t want to watch the news. Because if they mentioned bird flu, the night would be worse.
I started washing my hands. Not excessively, at the time, but more than I ever had before. And every night, without fail, I lapsed into panic until I couldn’t stay awake anymore. Lather, rinse, repeat for two weeks.
We continued traveling. I ended up on MTV, in a documentary about The Sims. I functioned, because I had to function.
I broke up with Peter because the idea of maintaining a relationship was so exhausting that I couldn’t handle it. After all, I was busy simultaneously trying to learn all I could about bird flu while at the same time trying to never ever hear about it again. Even after they determined that it likely wouldn’t kill us all, references to it worked the same way that passing a Left Behind book had worked years before. Just hearing the words was enough to make me anxious.
And now, more than ever, being anxious caused strange things to happen. If I was anxious, I needed to do things to make myself less anxious. Maybe it was counting or washing. Maybe it was cleaning. Maybe it was repeating something in my head a certain number of times. I just had to make things feel right.
By the middle of 16, bird flu worries had died down, but the health anxiety was stronger than ever – and that June, when it combined itself with my old friend, scrupulosity, I experienced the my first taste of true non-functionality.
We were in the Middle-Of-Nowhere North Carolina.
I’m sure this is an actual spot.
It was Tick season. That’s how it started. One morning, I woke up and thought to myself, what if there was a tick in my hair yesterday and I missed it? In my mind, I could see myself pulling something out of my hair. What if I’d left the head embedded? What if I was going to get sick? I knew Rocky Mountain Spotted Fever could kill.
I started checking my wrists for signs of rash. First every few hours. Some hours, every few minutes. I’d rush inside to check my hair, to make sure another tick hadn’t gotten in. I spent more time checking myself than I did actually getting anything done. And while the checking would alleviate my worry for awhile, it always came back, more and more frequently. I couldn’t stop. But I didn’t want to keep checking. But I was terrified not to check.
By the time I finally convinced myself that death was imminent and told my parents that I thought I’d missed a tick (and was told in no uncertain terms that I wasn’t dying) I had quite literally worried myself sick. I ended up with a cold, which was the worst thing that could have possibly happened, because that cold (as all of my colds do) turned into the sinus infection from hell.
We were at a campground with a church. And for whatever reason, my dad decided that we needed to attend services one Sunday. We hadn’t been to church in years, and I really, REALLY did not want to go. But my protests were met with anger. Of course I was going. I wasn’t going to be an embarrassment.
So off I went.
The preaching was on The End of the World, and signs that it was coming. The only real miracle that occurred in that church was the fact that I managed to stay in my chair. Barely. I curled up in it. I brought my knees to my chest. I wiggled. I couldn’t stand to listen to what he was saying, because my anxiety made me feel like I was coming unglued, like my body was turning itself inside out. I couldn’t ritualize in my head fast enough to counteract all of the “bad” things that the preacher said.
And when it was over, I literally ran out of the building, to the trailer, and got into bed.
Not soon after, my father followed. Mad as hell. Yelling at me about how much of an embarrassment I was. About how I reflected badly on him. Why couldn’t I JUST do something for him, and sit through a simple church service? Why did I have to act like such a spoiled little brat?
I had a hard time explaining myself. When I did, he said, “I thought you were over all that.” And he tried to be comforting, with the same old religious doctrine that had made my life miserable when I was 11.
But never again did he force me to go to a church service.
And it took me years after that to be able to walk into a church without immediately having a panic attack.
So the religious fears came back, with a vengeance. And the sinus infection raged. I started having headaches. Little ones. Then a constant, massive headache. And it wasn’t long before the what-if monster in my head grabbed on.
What could cause a massive headache? I wondered. Your eyes could be going bad. But if my eyes were going bad, that could be a symptom too. I started spending hours on Web MD and Mayo Clinic. Before long, I had my answer.
It was a brain tumor.
It had to be a brain tumor.
I looked up the other symptoms. Numbness. Tingling. Strange sensations. Well I had those nearly every day, thanks to panic. Maybe it wasn’t really panic.
I started checking for symptoms. And more and more, I stayed in my little bedroom in the camper. I didn’t want to leave it. I didn’t want to be outside. I couldn’t concentrate on anything, because I was so busy what-iffing and mentally checking that nothing got done.
I spent a month like that. On good days, I left the camper voluntarily. On bad, I stayed in bed with books, the computer, and the TV. I would drop hints around my parents about having headaches. Sinuses, they told me. And for three seconds, I’d feel relieved, until I wondered what if they were wrong.
When I’d once again convinced myself that I was going to die, I said that I might need to go see a doctor. I mentioned my brain tumor fears. I saw the look. The “Really? Again?” Look.
I went to a GP. She told me I had GAD. Generalized Anxiety Disorder. And Panic Disorder. A double whammy.
Oh yeah. And a sinus infection.
She gave me a prescription for Bactrim, a sulfa based antibiotic, a prescription for Ativan, an acute anxiety med, and a sample of Lexapro.
My dad was not pleased.
Didn’t I know that taking those mental health drugs would ruin my life? They’d go on my record. People would think I was crazy.
I took one anyway.
And like the good little Obsessive-Compulsive I was, I followed the directions on the antibiotic bottle exactly – it said two tablets a day. So I took two, missing the part completely about taking them at 12 hour intervals.
And then I learned that I was allergic to sulfa based drugs. And spent the next 16 hours more miserable than I’d ever been in my life, starting with a panic attack that I couldn’t hide from my parents of massive proportions and ending with a feeling like the worst part of a flu that just wouldn’t go away.
I never took another Lexapro tablet again. Dad told me the Lexapro had done it. I knew he was wrong, but I became so afraid of the meds that I couldn’t bring myself to swallow them.
After getting a new antibiotic, a nice Penicillin based one, the sinus infection left, and with it, my worries about brain tumors. We traveled north until October, when we came back to North Carolina. To make a long story short, the original buyers of the house bailed, and we found ourselves once again saddled with a house to sell.
While we were parked in the yard of the house we’d left, I decided that I wanted to get a job. I’d never held a job before – not one that wasn’t for my parents. So off I went applying, and when Target called back, I was ecstatic.
It lasted three weeks.
I became so consumed with making my cash register clean, the magazines and candy straight – all of the cash registers clean and straight – that I was a terrible clerk. And when I had to stop cleaning and straightening to wait on people, I became anxious. And then I had a panic attack at work. Just one.
Which led me to fear being in the building at all.
And then to fear leaving the camper.
When we went out to dinner with friends one night, and one of them commented on me, I made a snotty remark.
I got yelled at when I got home.
I’m sure, in retrospect, that my parents – dad really – thought he was being a good parent by keeping my behavior in check. But I spent my life getting in trouble for things that I couldn’t help. And honestly, it didn’t make things better.
I quit the job. We traveled to Texas for my best friend’s baby shower that December, and we just never left.
The panic attacks were out of control by that time – but I was too embarrassed by them to tell people. I didn’t even tell Kelly, not really. She knew about them, but I was most certainly not going to let her see me having one.
Which made the first of December, when I spent a week in her house, really very interesting.
To start – we were scrapbooking. It was a mess. A certifiable disaster zone.
And I couldn’t stand it. And I couldn’t fix it.
Then we went to a book club meeting where they talked about a religious book. And I’d had a glass of wine, because I could. But that made me realize that I couldn’t take the ativan I was carrying in case of panic attack.
Which, of course, led to a massive panic attack.
Rather than saying anything, I asked for the keys and went outside, where I sat on the curb, in the cold, and rode the panic attack out. When Kelly found out, she was… pissed. How dare I hide that from her when I needed help.
But making myself vulnerable in that way just wasn’t something I could do. I barely knew how to handle panic attacks, let alone all the other bizarre stuff that I did when I was anxious. How could I TELL people about it?
When Kelly finally had her baby, it got worse.
I spent nights with them, doing night feedings and trying to help Kelly and CG get sleep. But fears plagued me. What if I accidentally dropped the baby? What if I hurt him? What if I couldn’t get him to stop crying and I snapped and went crazy and shook him to death? What if I really WANTED to hurt the baby? Did that make me a bad person?
I started avoiding situations in which I thought I might be the most dangerous.
But the obsessions got worse. A sexual abuse survivor, I knew the statistics. What if I turned into a horrible person and hurt He-Who-Would-Become-The-Tackler in that way? The thoughts were unbearable.
And because I couldn’t stop thinking them, I started doing bizarre things to make sure they went away. Cleaning. Scrubbing. Handwashing. Repeating things in my head. Counting.
Then, one night, while I sat on the couch – I found myself in the anxiety chatroom, having a conversation with Angel about how she thought I had OCD.
I hadn’t mentioned my fears of harming the baby. I couldn’t tell people about that! But other things, I had. And after she said she thought I had OCD, I pretty quickly got on board.
Of course, I didn’t tell anyone.
My family had decided to stay in Texas. We liked it here. We were in a campground in Bastrop, only an hour from Austin.
One day, I took a shower there and looked at the hair in the drain.
“That’s a lot of hair,” I thought. What if my hair is falling out? I started running my fingers through it. More and more often, I would come out with fingerfulls of hair.
I was afraid to shower. I was afraid to brush my hair. But I couldn’t keep my hands out of it. If it was falling out, I was certainly helping it along, because my desire to pull it out overrode my common sense. And then, checking in the mirror, for hours a day. Once again, I was almost non-functional.
Then there was the cleaning. The fact that if things weren’t right, they were wrong, and if they were wrong, they were bad, and if they were bad, bad things would happen.
I told my mom something was wrong with me.
And I was mad as hell when she told me she’d made a therapy appointment.
I didn’t want to go. I did NOT want to go. Under no circumstances did I want to go.
As it turned out, the therapist was… not a pleasant woman. She sounded like she was at a funeral all the time. And I gave her a hard time. “Have YOU ever had a panic attack?” I asked her. “What makes you think you’re qualified to treat me?”
I never went back.
Finding the right therapist can be hard. Understatement of the century. Finding the right therapist is like pulling teeth. Everyone needs something different. I decided to take control. I’d find someone I didn’t hate.
Apparently my instincts were right.
When I called Kim, the first thing I said to her was, “I’ve been diagnosed with GAD and Panic Disorder, but I’m pretty sure I have OCD.”
She said okay.
Three years later, I’m still with her.
Finding the right therapist was, by no means, the end of it. I had to tell Kelly. By this time, she’d seen many panic attacks. She knew I was a little nuts, and didn’t seem to mind. But the idea of adding yet another layer to my nuttiness was intimidating. And I had always been afraid to tell her things. I had always been afraid of judgment.
Particularly since some of my obsessions involved being afraid of killing her and her children.
By this time, I’d gone back on meds. Paxil this time. And Xanax.
Unfortunately, the Paxil made things worse before they got better. My OCD symptoms had never been so prevalent – and the Paxil made me manic. Dosage increase days were hell – and most of them were spent with Kelly. To this day, I’m not sure why or how she tolerated it. Within an hour of taking the meds, the obsessions would start, and the compulsions would follow. I’d scrub the table for hours. Or clean three tiles on the floor over and over again trying to make them feel right, otherwise bad things would happen.
I meticulously folded plastic bags into perfect squares, and screamed at her when she wrinkled them.
I vacuumed in perfectly straight lines, and panicked when she took the vacuum away from me.
Shopping became a problem, because I couldn’t get out of check-out lines without fixing things. I couldn’t get out of the stores because I had to fix the displays. They weren’t RIGHT.
I swept. I swept to prevent car crashes, using the all-powerful broom.
I panicked. I cried. I was miserable. I was afraid I was going to hurt her. Afraid I was going to hurt the kids.
I had “flashes,” where I could see in my mind terrible things happening, and had to ritualize to prevent them. If I saw myself doing something bad, I washed. I washed to keep myself clean. To make up for the bad thoughts.
About three months in, I was at Kelly’s house one night when I became afraid I was going to go crazy and kill her. They’re called Morbid Obsessions… and they’re hard to shake. I left a note on the fridge. I took the keys from the hook, and I left the house in the middle of the night. I sat in my car until about 6, when Kelly forced me to come back inside.
I was so anxious that I couldn’t even get words out.
The word repetition compulsion had started by then. I STILL have trouble with it. Like Howard Hughes, repeating again and again when I’m at my most anxious.
I decided to go on a third medication, convinced that the Paxil and Xanax weren’t working. I was so exhausted – I couldn’t even fathom functioning normally, because everything I did revolved somehow around OCD.
I added Risperdal to my drug cocktail, and miraculously, it worked. I was flash free for the first time in years. I took Kelly to therapy. Slowly, I started to become more… normal? Less dysfunctional, at any rate.
By the time I turned 18, I had gotten most of the major symptoms under control. Anyone who tolerated me during the time it took me to get there, though, deserves a medal.
I’m nearly 21 now. I stopped hiding my OCD and Panic Disorder a long time ago. I use it now, to be an advocate. But make no mistake… It isn’t gone.
OCD is a forever disorder. You can manage it, but it will rear its head from time to time. I still have panic attacks. I still have bad obsessive-compulsive weeks. I still sometimes take skin off my hands because I’m afraid of germs.
I use services for students with disabilities at the University of Texas, because OCD IS a disability. There are things that I just can’t do without accommodations. Test taking and paper writing are hard, because the anxiety of making a mistake gets in the way of progress. I check answers.
I still repeat words. When my dog got fleas this summer, I showered for two straight hours. With him. In my clothes. I knew it was irrational. I knew that it was the OCD telling me if I didn’t wash a certain number of times, something bad would happen.
But I did it anyway. Because that’s what OCD does.
Anxiety is still and will always be a huge part of my life – but that’s okay. Now I work with it. Now I use it to help other people. Now I talk about it, because someone has to.
Someone has to tell parents that while it’s okay to be angry about their child’s anxiety, it isn’t okay to take it out on the child.
Someone has to tell people that finding the right drugs and therapist can take time.
Someone has to tell people that their “bad thoughts,” their scary obsessions… they’re normal. They suck, but they’re normal. Someone has to tell people that it gets better. That it’s possible to go from non-functional to functional, with a little support and a lot of hard work.
I feel like a public service announcement. I feel like this on a daily basis, when I stand up and say “I am what OCD looks like. It isn’t funny. It isn’t like what you see on TV. No one wants to have OCD, but for those of us who do have it, it is a legitimate disability.”
We aren’t there yet, as a country. We aren’t quite ready to embrace mental health. But I hope that in the coming years, we will be. If I talk. If others talk. If we stop pretending that these problems don’t exist. If we stop hiding.
I have OCD, and I’m not hiding it anymore.
Please share this blog with others, and tell them to share. Help raise awareness of what OCD is really like.
Check out Bobbi on her blog or contact her here.
For another story of someone living with OCD, view the Peace of Mind Foundation and hear Elizabeth’s story. She spoke at the Texas affiliate meeting last weekend and it was an eye opener to me, even after four years of seeing OCD firsthand.
My post about OCD – from an outsider not knowing what the hell to do – is here.
Thanks for reading and helping spread the word about Obsessive Compulsive Disorder.