Ohhhhhh C D! Inside the head of obsessive compulsion

Earlier this week, as part of OCD Week of Action, we published a guest post by our OCDiaries columnist, Katie Phillips, about her experiences with Obsessive Compulsive Disorder. 
The response to her piece has been so huge positive, that we decided we really had to talk with her again, in much more detail this time, about what it's like to live with OCD - how it affects everyday life from the personal to the professional, how it can start, how misunderstood it still is, and how incredibly difficult it is to live with. 

In her usual funny, honest and spirit-liftingly no-bullshit tone, here is the awesome Katie, answering questions put to her by our OCD-novice Editor. 

*****

OK, Katie, so you have Obsessive Compulsive Disorder. God, you’re so OCD!
Shut up.

Fair point. But you are so OCD, right?
If by “so OCD” you mean tortured in the head by intrusive thoughts and stress then yes, I guess you could say that.

OCD is where you line things up neatly in your fridge and alphabetise your condiments, right?
Nearly, but….no. Wrong. Very very wrong. OCD is a time-consuming, agonising illness that relentlessly tortures and controls you 24/7. (It’s even open for business on public holidays.)

Oh. Not just a Little Thing, then.
Not at all. On paper it may be just three letters, but they embody something that has basically ruined my life for as long as I can remember. From a distance OCD looks like a little inconvenience, much like the moon looks like a little dot in the sky from Earth. But when you zoom in and get up close, it is HUGE and full of craters and flags you were never able to see before. (The moon, not OCD. OCD is just full of total shit.)

I feel a bit embarrassed now. Do you hate me?
Of course. But you can make up for it by buying me a penguin. I like penguins.

Damn. I've found one penguin on eBay, but it's for collection only. From Antartica. 
So let’s shake hands and start again.
Tell me what having OCD is like for you, and how it affects your life.

OCD doesn't really affect my life, it is my life and I rarely do anything that isn’t controlled by it in some way. Instead, it’s more that “life affects my OCD”, because annoying things like dentist appointments get in the way of times when I feel compelled to wash my hands. From the moment I wake up I'm filled with anxiety of impending disaster, and I fill the hours until I can go back to bed again doing everything I can to try and prevent those disasters from happening. Every ascent of a staircase, every page read, every shower taken isn't just something I’m doing, it’s a very serious matter of life and death for me.

Do you wash your hands because you’re afraid of the germs, or because it feels nice to have washed them, or because you think if you don’t, bad things will happen?
This is a tricky one because over the past few years it has changed, and switched from one to another. I can pin point the exact day I started to develop severe OCD, and on that day it was because I was made aware of a certain disease. (I’m still so scared of it that I can’t write the name of it here). From that moment on I washed obsessively.
In those early days, the entire purpose of my lengthy showers was to get rid of the germs and avoid the disease, rather than any other kinds of disaster. Soon though, it escalated and the thoughts became more intense. Instead of getting the intrusive thought “if you don’t wash you will get the disease”, it became “if you don’t wash, your mother will die and it will all be your fault” which is, understandably, just a bit more terrifying!

OCD is often the result of imagined (and almost certainly impossible) causes and effects, like 'If I don’t get out of bed with my left foot, this will be a terrible day.' Which is obviously bonkers and untrue, but it can FEEL overpoweringly so. I used to do this. My alarm clock had to ring 6 times. If I missed it, I had to switch it off and on again until it rang only 6 times. Also, I used to squeeze the air out of my lunch box with my right thumb, when I closed it. If not, it felt wrong. The whole day felt wrong. Does this ring true for you?
Sort of. I’m always connecting things I've done with things I can’t possibly have affected. When Michael Jackson died I was in a mental hospital being treated for OCD and I was convinced that his death was due to my psychologist challenging my OCD the day before. I KNOW that it makes no logical sense at all. My touching a door handle didn’t send waves of magical power across the ocean, which then killed Michael Jackson. But I’m able to believe it might have.
I even believe that I was responsible for sinking the Titanic - and that was nearly 100 years before I was born! I don’t understand how it could have happened, but the guilt and anxiety I feel that I created such a disaster, is still there.

Other than the daily rituals and activities of obsessive compulsion, can OCD affect other things like what you eat, your friendships, education, job prospects and so on?
Completely. When it comes to food I find it hard to know whether certain difficulties I experience are because of my OCD or my eating disorder, but I can clearly see how OCD affects everything else. Thankfully, I have amazing friends who support me, follow me to the bathroom to help me wash my hands and help with public door handles, but there are friendships and romantic relationships that have broken down because they couldn't deal with my inability to do anything normally, or because my OCD made me too scared to join in and socialise with them.
This is especially true when it came to travel. I find it hard to leave the house, let alone leap on a plane and deal with the ensuing overwhelming anxiety.
In school OCD also affected everything. I was frightened that things which had been to school with me were contaminated, so I didn't allow them into my house. So homework had to be done elsewhere - for example in the shed.
I couldn't focus in lessons because my thoughts were so powerful that I would sit there trying to listen to Pythagorus’ Theorem, but all I could hear was the screaming of all the potential disasters I needed to be avoiding. At least for normal lessons I could catch up at a later date. But during exams with time limits, it was a nightmare.

For my GCSEs I struggled with writing words 'right', and had to waste lots of time writing a word over and over again until I felt it was 'right'.
In my English exam I had to write an essay about Steinbeck's 'Of Mice and Men'. We had an hour to complete the task and I spent at least 20 minutes of that writing and rewriting the word 'Lenny'. 
(Unfortunately, submitting a full page of hand-written 'Lenny's isn't how you pass exams). Essay questions were the hardest, but even Maths was a disaster; I was so terrified of some numbers and the consequences of writing them down, that I’d quite deliberately write the wrong answer.
It was a toss-up, but I reckoned getting a good mark wasn’t quite worth killing my whole family for.

In terms of living with it, are there any things that help you, or might help others?
I think what helps me most is hearing about other people’s experiences of OCD, and awareness of the fact that OCD is an illness that I have to fight.
When you have OCD you often feel like the only one; like you have this special control over things that nobody else has. Hearing that other people also feel they are special is like confirmation that those powers you think you have are part of the illness playing tricks on you. Hearing other people talk about OCD is also helpful because I can see how bonkers it is, and can try to apply that rationale to myself.
Once, in hospital I needed to put a pillow case on a pillow. I was unable to touch the pillow but I could touch the case. My friend in the next room, could touch the pillow but not the case. I looked at her and thought, “That’s ridiculous! She doesn't need to be scared of a pillow case!”
She was looking at me and wondering why I was scared of a pillow, when I could handle the 'hazardous' case with such ease.
Experiences like that remind me that OCD tells lies to sufferers, so if I’m a sufferer then maybe it’s lying to me too.

I've found that just forcing myself to feel the discomfort of NOT doing something the way I usually do - even tiny things like not sucking the water out of my toothbrush when it's exactly parallel to my teeth - and realising that nothing bad ever happened, gradually grew to being able to walk to work a different way, and not worry about all of these things. That really helped me. Is that something you think you could do? Or is it ridiculously naïve of me to think it’s this simple in someone who has severe OCD?
I don’t think it is naïve, but I think it’s idea of “why can’t you just stop?!” that makes OCD so hard for people to understand.
To me, OCD isn't about feeling uncomfortable if I ignore it and I resist a ritual. It's about being seized by utter terror and unable to think of anything else, if I did. 
Take your toothbrush thing, for example. Someone without OCD might feel better sucking water out of their toothbrush a certain way, and if they don’t do it that way it feels uncomfortable, like a slight burn on the palm of your hand. You can feel it there and think
“Well that’s annoying, I prefer having my toothbrush at another angle so that I don’t get this burn”. But eventually over the course of your day you'd forget about the burn and it wouldn't remain in your thoughts.
With OCD you feel as if you’ve been set on fire; it’s impossible to ignore. If people came up to you and said, “You don't need to do the toothbrush thing again,” the reaction would be less ‘Oh, OK I’ll try and forget about it then’ and more,
“WHAT THE HELL ARE YOU TALKING ABOUT?? OF COURSE I HAVE TO DO IT AGAIN. HOW THE HECK CAN I FORGET IT?? I’M ON FIRE!!” You aren't doing the ritual to “feel more comfortable”; you’re doing it to avoid being burned to a crisp.

Do you see a day when you won’t have to live like this any more. Do you WANT that day? Or is there some sense that you feel you want to have this forever because it’s a part of you, and it’s your safety net, so without it...what are you?
I would absolutely love to say yes but honestly, I don’t think I will ever reach a point where I don’t have OCD. I truly do want to be free to open doors for people and shower in five minutes if I need to, but it's been over a decade since I’ve lived like this, and I can’t imagine life without it.
OCD certainly feels like a part of me; every thought I have is an OCD thought, so if we are made up of thoughts and the things in our heads, then I don’t know who I am at all without it.

I don't know where the OCD ends and I begin, because I can’t remember what life is like without it. That said, I would love for this not to be the case and that’s why I continue to fight.
Do I think my OCD will ever go? No. But do I live in hope that it will, and keep fighting even on the darkest days?
HELL YES.

Katie. 

Liz Fraser