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.

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:

6c6933bd-1c13-4ed1-9915-08dee5cf186f

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

 

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.

How Not To Meet Someone with Tourette’s

two person shaking hands near white painted wall

  • Ask they why they’re not swearing (only a minority do)
  • Ask why they haven’t ticced yet (people with Tourette’s don’t tic every second of every day)
  • Say they don’t look like someone with Tourette’s (what does a person with Tourette’s look like?)
  • Ask if their condition is quite mild (Tourette’s waxes and wanes, can be quite severe for several months and then quite mild for the next few)
  • Copy their tics (this won’t make them less embarrassed, it will just make them self-conscious)
  • React to all their tics (this is just excessive)
  • Back away from them (if you’re embarrassed by the tics, well, just don’t be embarrassed by the tics)
  • Tell them to “say the bad word in their head” instead of saying it out loud (this is not how Tourette’s works)
  • Laugh when they haven’t ticced anything funny (Tourette’s is a medical condition, not a punchline)

Things People Actually Have Said to Me About My OCD, Autism, Tourette’s and Depression

assorted medication tables and capsules

  • That a vitamin could cure my depression
  • That I couldn’t be autistic because I was in a relationship
  • That I couldn’t be autistic because I used to work in a bar
  • That I couldn’t have Tourette’s because I used to work in a bar
  • That I was ‘putting on’ my Tourette’s because I had read about it somewhere and was imitating its symptoms
  • That my OCD was a ‘good thing’
  • That everyone is a little bit OCD
  • That everyone is a little bit autistic
  • That everyone gets depression
  • That if I really understood my Tourette’s I would be able to control it
  • That I should just “think the bad word in my head” instead of saying it out loud
  • That I should just ‘calm down’ when having a literal tic attack
  • That my depression was ‘all in my head’
  • That I didn’t deserve my depression 

Most People Don’t Swear but I Do

woman raising middle finger

Whenever I meet new people and I have to explain that I have Tourette’s, I make sure to explain that I am an anomaly.

Firstly, I’m a woman and Tourette’s normally affects males.

Secondly, I got Tourette’s in my twenties and most people get it when they are aged six to seven.

Thirdly, most people with Tourette’s don’t experience coprolalia – the compulsion to swear – and I sure as hell do.

In this sense, I am a walking, talking, yelling stereotype of the condition, because most people with the condition just equate Tourette’s with yelling out curse words. And I yell out curse words. A lot.

In some ways, I feel I’m letting the Tourette’s “community” down (hate that word – it’s not like we’re all in the same WhatsApp group or anything) for being so sweary. A lot of people with the condition have it quite badly and don’t ever utter an expletive involuntarily, and they have to live their lives explains that only 10 to 25 percent of Touretters swear involuntarily.

It’s a statistic I make sure to repeat as often as I can, because I don’t want to be purporting the myth that all Touretters swear involuntarily as I walk around swearing involuntarily.

In some ways, because I fit the media stereotype of Tourette’s, my life is easier. I don’t have to explain what I’m doing because my Tourettic symptoms align with people’s preconceptions. Instead, I just choose too, deciding to explain Tourette’s as thoroughly as I can, from the blissfully ignorant strangers I meet in bars to the people “whose cousin has Tourette’s too”. (Seriously, I’ve heard that sentence so much, I’ve come to believe everyone has a cousin with Tourette’s.)

I guess it’s my way of “doing my bit”. I’ve got this thing, and I’ve got it forever. I might as well tell the world about it.