Why do you want a label?

Sometimes, people dismiss psychiatric and neurological diagnoses as “labels”. This is curious. Conditions pertaining to parts of the body are rarely, if ever, dismissed as such. Since when are stomach cancer, diabetes or high blood pressure ever called labels?

But labels, or, to use the proper term, diagnoses, can be enormously helpful.

Firstly, labels are useful for treatment. If you have Borderline Personality Disorder, but don’t have the official diagnosis, then it’s unlikely you’d be referred for Dialectical Behavioural Therapy, and unlikely that you’d get your condition under control. The case is the same for OCD and Exposure and Response Prevention Therapy, depression and cognitive behavioural therapy, and just about every other psychiatric and neurological condition out there. When diagnosed with OCD, therapists taught me more about the condition, and after a while, I knew which thoughts were part of my illness and which thoughts were part of me. I was given the right medication, and with it, managed to get the incessant, intrusive thoughts somewhat under control.

Secondly, labels are helpful on an emotional level. The relief I felt when I was diagnosed with OCD was enormous. I had known for quite a while that I had the condition, but when I was officially bestowed with it by a psychiatrist, quite suddenly, I knew I wasn’t the only one who was plagued by intrusive thoughts and ruminations. Now I can connect with other people who happen to also be autistic, obsessive, compulsive and/or Tourettic, without feeling guilty that I do not have the official paperwork to back up my suspicions.

On a day to day basis, people don’t tend to announce their medical conditions. But online, some wonderful people decide to open up. I don’t have any real-life friends with autism or OCD or Tourette’s. But the fact that I can share similar experiences with people across the globe makes me feel less alone, and that, I would argue, can only be a good thing.

What it feels like to live with OCD

grayscale photography of boy and girl on swing

For as long as I can remember, I have had obsessive compulsive disorder (OCD). Going to bed as a little girl was a time-consuming ordeal. I would be tucked in by my mum and dad, and upon them leaving me to head off into the land of nod, I would get up again, close the door just so, turn the CD player on and off 17 times and check under my bed 17 times. I would meticulously line up my toys so each of them had an equal amount of space, and then eventually go to sleep, much later than my parents ever realised.

OCD wasn’t just there in the night, of course. It followed me around in the day, too. Every time I would walk into a room, I would check the corner for spiders, check under the table for spiders, check under the seats for spiders. It wasn’t that I was a crippling arachnophobe, it was more that spiders were wrong, weren’t meant to be there, had to be removed.

OCD wasn’t just there when I was a child, either. It followed me into adulthood, taking a more pernicious form; I found myself losing control of my thoughts entirely, my mind being completely absorbed by my obsessions, even if the compulsions had calmed down a little.

For me, OCD feels like you’re not in control of your brain. Intrusive thoughts – vivid, visual images of the most horrendous things – plague me on a daily basis. I pick up a knife to chop an onion and see myself stabbing someone. I pick up a cup of tea and see myself throwing it on someone. I stand on the Tube platform and see myself pushing someone onto the tracks.

The questions I ask myself whilst thinking these thoughts do not help matters at all: What kind of person could conjure up such ideas? What if I did act upon these images? What if these things are what I subconsciously want to do? The questions only lead me around in circles, and fuel the intrusive thoughts until they return with a dizzying ferocity.

Ruminations over past events play in my mind so loudly it’s almost as though they’re audible. A constant soundtrack to my days, it’s as though I’m listening to the same song on repeat for years, only the song is a hellish event from my past and it accompanies me from the second I open my eyes to the second I finally manage to close them at night.

The questions I ask myself during my ruminations are not helpful: What if I said something differently? What if I did something differently? What if it had never happened at all? The questions only lead me around in circles, and fuel more ruminations.

Right now, my OCD is just about under control. Yes, thoughts still intrude. Yes, I still ruminate. But the intrusions and ruminations are muted somehow. I am on 150mg of sertraline and have educated myself on unhelpful thought patterns.

For now, I am just grateful for the quieter spell, but nevertheless irritated when people laugh off OCD as a personality quirk, when it’s dismissed as something everyone “is a little bit of,” when it’s aligned with being meticulous, organised, a perfectionist – qualities anyone could put down on a CV, rather than what it is: a horrible condition that requires treatment, support and empathy.

These misconceptions about OCD need to change. It’s about time OCD was taken seriously, because what it is, is no fun at all.

This post was originally published on the International OCD Foundation blog

 

University wasn’t the place for me, but I’m determined to go back

books on bookshelf

University wasn’t the place for me. I’m not saying it was bad. I’m just saying it wasn’t good. I didn’t care about the Mexican Revolution, religious symbolism in the work of J. L. Borges, or the exploration of the self and form in twentieth-century France. Likewise, I did not care about the difference between the pronunciation of “vu” and “vous”, “pero”, and “perro”.  I did not care about getting an F in a relatively unimportant presentation. I did not care that my tutor declared my essay on feminism to be “decidedly mediocre”.

Instead, I cared about evenings in pubs, walks in the park and sessions at the gym. I cared about staying up all night watching films and reading books not on the syllabus. I cared about cycling from a bar to my friend’s house at 1am on a Monday morning. I cared about going to gigs, visiting photography exhibitions, and rummaging through Spitalfields market on a Sunday.

When it came to studying, I tried, but only sort of. Half an hour before class was due to start I would open my workbook and frantically scribble something down. In the evenings, I would read novels of my own choosing before embarking on (and then later abandoning) the set texts. As for the presentations, I would usually just miss those classes and carry the fail. Invariably, I would turn up to every class utterly unprepared, having no idea about what was about to be discussed, and caring very little.

At the end of my three-year degree (which took me five years to complete), I received a transcript of my results, telling me that I had received one fail, two thirds, 2:2s, 2:1s, and firsts – all of which averaged out into the most meaningless 2:1 the uni must have ever given.

What the transcript didn’t say was that, during my studies, I had experienced debilitating depression, unrelenting OCD, one terrible coming out, one terrible relationship, one terrible break up, and the onset of Tourette’s syndrome.

OK, maybe university was bad.

This year, though, I have a place on UEA’s Creative Writing MA, and I’m determined to go back to my studies.

But if my undergraduate was so tumultuous, why am I doing this?

The answer is simple: university is, for me, unfinished business. I need to go back: get consistently OK grades, stay on an even keel for the duration of the course, keep my depression and OCD at bay. There’s not much I can do about the Tourette’s, given that it’s both chronic and incurable.

It’s going to be hard. I have the stereotypical swearing kind of Tourette’s. I will be yelling out “fuck” in lectures. I will find it hard to concentrate. I will inevitably be a distraction to myself and others.

But, unlike my BA in French and Spanish, this course has been a dream for a long time. I will spend a whole twelve months doing what I love: reading and writing. Reading helped me through depressive episodes before, and getting my writing published since leaving university has given me a much-needed self-esteem boost.

And if mental illness has taught me anything, it’s to do what you love, and do it a lot.

So that’s what I’m going to do. I’m determined to go back, and I’m going to smash it.

This blog post was originally published on the Student Minds Blog.

What Does Disability Look Like?

According to a recent study, 9 out of 10 people would challenge someone using a disabled toilet if they showed no visible signs of disability.

This is a sorry statistic, suggesting that most people think “disabled” means “in a wheelchair”. This, of course, is compounded by the sign on most disabled toilet doors:

blue and white disable logo

In reality, disabled people look just like me or you. Sure, some use chairs or sticks, but innumerable people have invisible disabilities.

I happen to have a disability that’s sometimes invisible, sometimes visible and sometimes definitely audible. However, I do not use a wheelchair or sticks, even when my legs do get a bit wobbly. That said, if my legs were ticcing a lot, I would like to think I could use the accessible toilet without someone telling me off for it.

Illustrating disabilities is difficult. So often, when you read an article about depression, the stock photo used is of someone, face ashen, wistfully gazing out the window. Like this:

woman touching her forehead

I don’t know about you, but I don’t tend to do this when I’m depressed. When I’m depressed, I can actually smile, laugh and look like I’m having the time of my life. Like this:

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It’s probably about time we stopped thinking of equating “disability” with “wheelchair”. It is, and has always been, a bit bigger than that.

 

Books, Books, Books

book signage hanging beside white wall

I spend hours in bookshops, browsing the shelves, reading the blurbs, sometimes sitting down and reading whole chapters before placing the book back where it belongs.

I buy books frequently. But not as frequently as I frequent bookshops. That would bankrupt me.

For me, books are a form of therapy.

Some of the most cathartic books I’ve read have tackled the subject of mental illness head on, and I’ve usually read them when I’m coming out of a depression – just when my concentration has decided to saunter back.

When I was nineteen, trapped in the inertia of that stupid illness, Kurt Vonnegut’s “Mother Night” wrote how I felt, word for word:

“It was not the thought that I was so unloved that froze me. I had taught myself to do without love.

It was not the thought that God was cruel that froze me. I had taught myself never to expect anything from Him.

What froze me was the fact that I had absolutely no reason to move in any direction. What had made me move through so many dead and pointless years was curiosity.

Now even that had flickered out.

How long I stood frozen there, I cannot say. If I was ever going to move again, someone else was going to have to furnish the reason for moving.

Somebody did.

A policeman watched me for a while, and then he came over to me, and he said, “You alright?”

“Yes,” I said.

“You’ve been standing here a long time,” he said.

“I know,” I said.

“You waiting for somebody?” he said.

“No,” I said.

“Better move on, don’t you think?” he said.

“Yes, sir,” I said.

And I moved on.” 

I read this passage over and over again, amazed that a dead American man knew exactly how I was feeling. In my blackest days, I would find myself anywhere: in a supermarket, in a shop, at work in the pub, and find myself frozen, unable to move, energy sapped out of me entirely. It was exactly like the protagonist in Mother Night. I was experiencing what medics would dryly call “a lack of motivation”, or what I would call a total absence of anything.

In secondary school, we are told to stop saying that we like a book because we can relate to it, or dislike a book because we can’t relate to it. That, apparently, is beside the point. It isn’t academic. It isn’t literary.

I ardently disagree. Seeing your experiences, the best and worst, written down on a page by a person who never knew you, is a wonderful feeling. It’s like someone is reaching out their hand, grasping yours, telling you that you are not alone. It gives you hope.

Have You Taken Your Meds?

two white tablets

One day, I decided to stop taking my anti-depressant medication. I was prescribed it for OCD and, unsurprisingly, depression, and had advised my consultant that this was what I was going to do, much to his indifference.

Coming off the venlafaxine was an ordeal. I experienced sleep paralysis, insomnia, brain zaps, dizziness, nausea and a low mood. The brain zaps were awful. It felt like someone was shaking my brain around my skull or giving me electric shocks. But the sleep paralysis, insomnia, dizziness and low mood were awful too.

It was all just awful.

Thankfully, after the longest two weeks of my life, the withdrawals stopped.

When I told my GP what I had done, she congratulated me. “Well done,” she said.

I was perplexed, and, if I’m being honest, a little annoyed. I wondered whether she had ever congratulated anyone for completing their course of antibiotics. I doubted that she had.

In the year that followed, my brain entirely free from any psychiatric medication, I had the worst time.

My head was spinning with intrusive thoughts: rapid, vicious and upsetting. They were there when I woke up and when I tried to go to sleep. They were there when at three-in-the morning when I got up thirsty. They were in the background as I tried to watch the TV. They couldn’t be drowned out by music or alcohol. They were relentless, incessant, maddening.

Eleven months later, I dipped back down into a sleep-deprived depression, and went to my GP, bleary-eyed and nauseated from the lack of sleep, begging her for zopiclone.

Instead of giving me this highly addictive sleeping pill, though, she put me on an anti-depressant which, taken at night, causes drowsiness.

That night, for the first time in months, I slept the sleep of the dead.

Nowadays, I can’t see myself experimenting with a med-free life. My brain, in its natural state, is not my friend. I need medication to temper my depression, calm my OCD, and soften my Tourette’s.

This isn’t a bad thing. I feel very lucky to be alive in a time where such medications are available. I just wish people weren’t so fearful of psychiatric medication. In my opinion, they’re there to be your friend when your brain is not. They’re not magic. They don’t cure everything. But they help, and for me, that is enough.

It’s OK to Hate Being Chronically Ill

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There are a lot of disability advocates out there promoting how disability and neurodiversity can be an excellent addition to the world, enrich our lives and be a boon to society.

This is, in my opinion an excellent conversation to be having.

After all, there is so much negative language surrounding disabilities and neurodiversity. We talk about people being “confined” to a wheelchair when they might as well see themselves as being liberated by their wheelchair. We talk about people “suffering” from autism when, I for one, do no such thing.

I don’t see my autism as an illness, it’s a condition I happen to have and it makes me who I am – the good bits and the bad.

But the same doesn’t go for my Tourette’s. I see my Tourette’s as an illness. It’s a chronic and incurable pain in the arse. I hate it. It’s done me no good. It’s made it hard to find work and keep work when I’ve got work. It’s made life awkward, embarrassing and oftentimes physically painful. It cost me one relationship when an ex decided to tell me she thought I was “putting on” my tics because I’d read about Tourette’s somewhere.

Opinions differ across the community. Some people with Tourette’s wouldn’t want to do away with it at all, saying it makes them who they are. Other people go through extensive treatments and therapies to try to rid themselves of their most problematic tics.

What I’m trying to say is, it’s all right to embrace one aspect of your neurodiversity and dislike another aspect of your neurodiversity. It’s all right to hate being chronically ill. It’s all right to love and hate your difference at the same time.

Being neurodiverse in a neurotypical world is difficult. All opinions and feelings are valid.