I am an OCD sufferer. I was diagnosed many years ago when I was 17 and since then, I’ve been on and off medication. The OCD itself is a living, walking nightmare. It is less of a ‘condition’ and more of an invisible yet loud set of voices dictating my every action everyday. Even when I sleep, I’m shouting and fighting off people in my dreams.
One of the worst things that comes with the OCD is the obsessive hair pulling. The correct word for it is Trichotillomania. A technical, scientific word that sounds nothing like the condition itself. But it happens like this. Everyday, you pick at the same area almost every minute. It’s like picking your nails, only worse. You can’t stop your hand from reaching up and just tugging at the hair, even though you can feel it rooted in your scalp, and as it tries to cling onto it, you still pick despite the pain. I’m afraid to get my hair cut because I’ve begun to see the part where it is receding ever so slightly at the front of my forehead. Now even when I try to ‘correct’ my hair into place, I can’t stop. I play with it over and over again, unknowingly. When it is clean, the pulling brings some comfort, it almost feels nice. But when my hair is dirty, I feel sick and ill, yet I can’t stop.
The few strands that I pick eventually get knotted up, become wire like and weak so that when I brush them out, the hair simply falls out. It’s relief mixed with destruction, that feeling of pushing your hair back and feeling and your hand getting stuck in those tangled up hairs like a car hitting a bad part of the road. I’m getting an anxiety attack writing and thinking about. So I get up and go wash my face. I pat down my hair over my forehead with water and I think that it looks ok, that no one will really notice it besides me and I can get away with it. But then I sit down and soon I’m picking it again while browsing my phone, or talking to someone or watching TV.
Sometimes I feel blessed that I have come a long way. Sometimes it feels like there is still a long way to go and the battle is never-ending. That I will have to live with this my whole life and it will get in the way of everything I do. I will say that I understand it better than I did before, even though that is still not enough sometimes. But along with the medication, and support, and talking, I’m able to have better days. But there are still days where the mind is my master and I’m its slave. It is not a cliché. It is the truth. Too often clichés that are truths are dismissed and so people’s stories are silenced. Too often people dismiss it as ‘I have a bit of OCD too’ and I sit there in silence, because I give up telling them otherwise. There is not enough awareness about what real OCD is, what it can do to a person, because for so long people have wrongly used the term to describe ‘neat freaks’ and people who just love ‘organisation’. If you have OCD, you have to repeatedly go over and clarify sentences, until you are sure that the other person has heard you, has understood you correctly, and has not taken offence. You can’t move on. You can’t get over it and not care because there is a voice in your mind that will dictate you and tell you that you are a horrible person and something bad is going to happen if you don’t correct what you said. When you have OCD, even thinking the wrong thoughts can result in the fear of someone getting hurt. The thoughts that are dark and twisted, which others can dismiss as ‘passing thoughts’ can cling onto you. Your brain will convince you that it is all you, thinking those thoughts. It will put the thoughts there to trap you.
I have every OCD in the book, and it is crushing. Sometimes I have hallucinations with it. And I am compelled to do things like speak out loudly and repeat myself over and over again. I still do it mostly in my worst moments or when something important has to be said to stop my brain harassing me or giving me intrusive thoughts. But it’s still much better than before. Nowadays, I can use the Internet and social media without stopping and having to scrolling up and down in certain ways. Before it was to the point where I would be sitting for ages doing just that, and in my mind I had to imagine something good in order to defeat the bad. It still fills me with anxiety and stress just talking about it… I don’t know what to say because words ironically are not enough, except sometimes I think I just need a cure in the form of a refresh button. A delete button in my mind so I can start a fresh page again.
Edited by @Durre_Shahwar on behalf of someone who wishes to remain Anonymous.
There is a part of my life that I try to keep hidden. It is destructive, dominant, the place where my darkest thoughts lie and my rational thought process cannot penetrate. Sometimes it remains quiet and unobtrusive, but at other times it pushes to my central focus and dominates my mind. I don’t walk happily alongside it; numerous psychiatrists and medications have tried to help me out-sprint it, but it always catches up in the end.
To those less aware of the the language of mental illness, my… what should I call it? A black dog is depression; I’m going to go with squirrel. A grey squirrel; some bastard that came and took over the native landscape and from which there is no escape.
To the ill-informed, my grey squirrel… it’s kinda funny. It’s shorthand. It’s a way of saying: “hey, I can sometimes be a bit picky about the way I do things!” It’s an attention grab, a way of highlighting idiosyncrasies, a moment of self-mockery that actually makes other people the butt of the joke.
Somewhat obviously, I am talking about Obsessive Compulsive Disorder, or OCD. I was diagnosed when I was 19; I literally don’t know how to be an adult without this illness.
I doubt I need to tell anyone reading this that OCD is not a personality quirk; it’s not a joke; it’s not something you can shrug off. I also doubt I need to tell anyone suffering from OCD what a punch in the face it is to hear people talking about it as if it is just that.
The problems this present-day attitude to OCD causes are numerous. For a start, if it’s such a lighthearted personality quirk, can’t I just… you know… get over it? Everyone is a little bit OCD about things! Try talking to someone who genuinely thinks like this and try to explain why you’ve had no sleep as your mind wouldn’t shut up, or how you have to cancel plans as you’ve got a nasty side effect from a new medication. They don’t get it. They’re not doing it deliberately, but they can’t ever really support you; they’ve been trained to see this illness as something else.
The language that people use and the conclusions they draw can be so hurtful when you’re trying to deal with this illness. I even have close friends who have said they’re “a little bit OCD” in front of me, and every single time it feels like they’ve jabbed a salt-covered finger into a gaping wound.
OCD is horrific. A few years back the WHO named it the eighth most quality-of-life damaging illness– and not mental illnesses, any illness. It robs your time, your energy, your freedom to do what you want when you want. I don’t need something else, perpetuated by a clueless media who seize on any buzz word that’s going, making a single second of my life any harder. My brain makes me feel bad enough, pretty sure the little chemical malfunction in my brain can take it from here, guys!
It’s odd how this is the one thing I have never managed to handle. I am largely out of treatment options for my OCD; the medical term is “treatment refractory”. Somehow, I’ve come to terms with that. I’ve even managed to come to terms with my OCD, in as much I accept it is going to continue to exist. Yet when someone scoffs at the suffering of up to 2% of the population… that I just can’t seem to process.
I’ve been shitting my pants over CBT for the 8 or 9 weeks since the people told me over the phone they were referring me to their high intensity team. Speculation is risky business, regardless of the subject matter. I put the feelers out with the few I trust and it turns out 2 people I know have had CBT. Both said it was hard work. One recommended a book, (Brain Lock: Free yourself from obsessive behaviour by Jeffrey m. Schwartz) which I started reading. I’m glad I did that because it explains a bit of the science behind an OCD brain and made me feel a little less fucking mental. Still, I’d basically managed to convince myself that I’d be faced with insurmountable tasks such as the one mentioned in the title.
Anyway. I met the lady, Lucy (That’s not her real name). I will see her every Friday for the next 11 weeks. Before and after each session, I will fill out a form about how I feel. She’s informed me that in each session, we will look in to the reasons behind some of my…weaknesses. There will be things that I decide to do, with her guidance. Like touching the door handle with my hand instead of my sleeve and waiting 2 minutes until I wash my hands. Then next time, or the next day, maybe I’ll try to wait 3 minutes. She says I decide how far to push it. And that’s cool with me. The thing I wasn’t expecting was the exhaustion afterwards. One of my friends told me that she went home and slept the rest of the day after her sessions because she was so drained. While I was talking with Lucy , answering her questions, I was fine. I barely teared up at all. It was only when I got home that I craved silence and solitude to come to terms with the things I have been thinking for years and never dared say out loud. Everything seems heavier now someone else knows.
Now it’s actually real. There was comfort in that with each new thing that I stumbled over telling her, there was this knowing look on her face. By the end, she was even preempting the next thing, encouraging the detail that I’d neglected such as the imagery associated with the obsessions. I held back on some things because I was scared to admit them. With others, I just didn’t realise they were relevant. I wonder if Lucy will be the one I can tell the darkest bits to. I wonder if 12 weeks is enough for me to trust her enough. I suspect I should just pay a shrink and go twice a month for the rest of my life.
Still, we did well for a first session. I managed to tell Lucy something that I’ve written in a notebook before. Something I’m not as ashamed of as some of the other thoughts. I told her that I feel like I could be brilliant. I feel like I could be a genius, an innovator, a writer, a comedian, a nurse, a spokesperson, an artist, a fucking astronaut!!! I feel like my possibilities are endless. I feel like not all of the possibilities are good, and I’m so overwhelmed by the choices that I tend to just…sit. It’s about fear. I know that I don’t want take my last breath thinking I didn’t try and knowing I didn’t achieve my potential because I can’t make a decision. So I need the help to stop that. But at the same time, I’m worried that the help will kill the creativity. According to the Internet, Van Gough said “I put my heart and soul into my work and have lost my mind in the process”.
Would losing my mind be a worthy gamble? Or shall I settle for reliable mundanity, regular visits to therapists and reliance on Prozac?