The truth about OCD

The truth about OCD is fucking ugly. Some folks assume it’s counting, or fear of germs. Some think it’s just a quirk; that I’m just a “checker”, that it’s just the “management gene” in me that likes things to be done in a certain way – properly. Some people just cannot get their head around it.
1. I have a fear of germs and contamination.
This means that I put my sleeve over my hand or use tissues to open doors, cringe whenever someone sneezes, refuse to use communal cutlery, and shower or wash often. It also means that if I don’t do these things I can feel the dirt. Example: I had to bring the bin in on the way to work. It’s a wheelie bin. Without thinking, I grabbed it with my hand. The handle was wet. It lives outside. The last person to touch it was someone who touches all of the bins which all of the other people have touched. I was already late. I thought about going inside to wash my hands again, but I decided to try and be brave. I believe it’s called exposure and response. During my car journey, I avoided touching anything else with that hand as much as possible and it began to feel warm and itchy until I was in actual pain because of the dirt and germs on my hand. I imagined them multiplying and spreading up my arm. It is distressing. So that’s why I cover my hands to open doors.
2. Need for symmetry. 
Symmetry and order, but only in some things. My room is a mess. My desk is a mess. I don’t know why this is. I’m not convinced someone will die, as is apparently common with OCD. I just like it. It just feels right. It almost seems to calm me a bit, but it’s the sight or feeling of unevenness that makes me feel distressed enough to need calming. I like to step on coloured floor tiles in shopping centres with the same part of my right foot as my left foot. I’ve done this since I was a child. Even without looking, I feel like I know one foot is uneven because it touched a coloured tile when the other one didn’t. Then I’ll try to compensate for it by treading on a metal carpet strip with the foot that missed out. It may look like I’m practicing for the ministry of silly walks.
I think this is the one that people understand the least and find most irritating. It’s also probably the most noticeable compulsion. There have been some really bizarre looks from people on checkouts when they see that my shopping is arranged like a jigsaw with nothing overlapping or stacked and the labels facing the same way on the conveyor belt. I am embarrassed by it but I give in to it frequently.

3. Intrusive thoughts.
These were the start of the checking. I worry about car accidents; that I’ve caused one or been in one and my brain is coping by pretending I’m still driving, like the dream that you’re getting ready for work that you have before getting out of bed. Intrusive thoughts can be anything from that time in 1997 when I forgot how to spell “doesn’t” and how fucking stupid I am for it, to being utterly convinced that one of my loved ones has died. Usually, these thoughts are completely illogical and I do my best to explain them away. There’s a weakness though. I’m terrified of burglars and fires. I don’t know why, I’ve never been a victim of either. It just seems like a more logical and likely thing to happen. As a child, I had a fire escape plan. I had a box of trinkets under my bed to grab and take so I wouldn’t lose everything. It contained a couple of photographs and small bits and pieces given to me by my grandparents and a tiny teddy bear head my mom made out of fimo when I was about 6. Even aged 6 I appreciated the beauty in that teddy head. I knew I needed to keep it (sign of hoarding? Another OCD trait) for a day when my mom was not around. I thought about death a lot as a child. I don’t know why. I kind of sound like one of those creepy kids from horror films.
4. Checking. 
A result of the intrusive thoughts; checking is the way my brain tries to control or quiet them. This is a common compulsion and the one that really indicated to me that I have a problem. This seems to be improving lately but I suspect that’s just because my other half is usually in the house when I’m not. The main things I check are locks and electrical items.
I can see the film in my head of my carefree drive home, seeing flashing lights as I approach my street, and realising the smoke is coming from my house. I see my reactions. I feel the pain that my tortoise has suffered and died and that I couldn’t save him. I feel the guilt for keeping a pet where he can’t escape. I feel the realisation that my photographs and books are gone, that the teddy bear head is gone. That I’ll never hold those things again and one day, I might forget they ever existed. I feel every single thing so very deeply. I see myself trying to hold it together, making phone calls and matter-of-factly taking control and making arrangements. I see the look in my face as I give the policeman a statement gripping on to a foil blanket with dishevelled hair and smudged eyeliner. I see myself in the hotel shower, sobbing uncontrollably.
I see and feel all of this in a matter of seconds. There’s a similar scenario with burglary and that is the feeling that makes me turn my car around a mile down the road and turn back to check the sun isn’t bouncing off a mirror. Check the doors are locked. Check there are no chargers still turned on and touching the carpet. But even after I’ve checked, and said out loud “The door is locked. Today is Wednesday 30th December and I have locked the door”, I’m still not convinced I’ve saved myself from the heartache of the burglary or the fire.
5. Skin picking. 
This is the one. This is the secret. This is my ugliest compulsion. I have picked spots and scabs for as long as I can remember. I’ve often spent hours in front of the mirror until my face is red and sore trying to get rid of every single blemish. They invariably end up worse; inflamed and angry. Recently, this has got a lot worse. In growing hairs, stray hairs (thanks pcos) and blocked pores. I manage to avoid my face mostly, with difficulty, but there are parts under my clothes that are scarred and pocked by my inability to just leave it alone. Sometimes, while I’m picking my skin, my brain thinks “That’s it. Get the evil out. It’s concentrated evil and dirt and grime in those pores, from outside and in.”
It is fucking ridiculous. I tell it to shut up. I tell it we will be late for work. It doesn’t care because that’s how OCD brain rolls. It’s a cunt. It also tells me how the picking could lead to mutations that cause cancer. Or maybe I have just picked out the cell that was going to cause cancer. But maybe there’s another one. And how will I know? It tells me to carry on even though it hurts and that I will feel a relief and gratification when I finally release whatever that is under my skin. The dirt, the hair, the spiders’ eggs, or parasites, but more likely just inflamed tissue caused by prodding, I imagine. I rarely feel any kind of relief from picking my skin. I don’t stop because I am satisfied, or finished. I usually stop because I can’t breathe from the positions I have tied myself in to dig holes in my skin. Afterwards I feel dirtier. I hate the scabs. I feel ashamed of them. I hope against hope that they don’t scar. I worry what my boyfriend and beautician will think. But I can’t stop. I don’t know how to stop. OCD brain takes over from rational brain. OCD brain ties rational brain up in a broom cupboard and goes to fucking town on the inside of my skull. If it stays in control long enough, I’m worried rational brain will succumb to insanity caused by being tied up in solitary for so long.

Living with OCD and Trichotillomania (Hair Pulling)

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.

My grey squirrel

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.

 

AJ Kelly

Taking The First Step

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?