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

 

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.

 

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.

Working with Mental Illness

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When I was nineteen, six years ago, I had to take a year out of university because I was suffering from depression. I had had bouts before and have had bouts since, but nothing has quite matched that one. This depression was an all-encompassing hopelessness, an abyss of “nothing matters”, “what is the point”, and “I don’t deserve to feel happy”. The full shebang, basically.

During my time off, I worked in a pub in the middle of nowhere. The stress of being the only bartender sometimes got to me. Every couple of weeks, I would randomly burst into tears. But this wasn’t the solitary single tear down the cheek kind of crying. This was the-world-has-ended kind of crying, the everything-is-lost kind of crying, the-my-life-has-gone-tits-up kind of crying. The type where I started crying about screwing up an order and ended up crying about crying and then crying about crying about crying. I felt pathetic.

The second time it happened, the assistant manager found me curled up in the staff room upstairs, and asked me what was going on.

“I have depression,” I said.

I can’t remember what she said in response exactly, only that she was going to tell the other managers, which she apparently did, because the next week, my boss said to me, “Why are you depressed? Do you have kids? Do you have a mortgage? Do you have bills?”

He didn’t talk to me with empathy. He didn’t talk to me with sympathy. He sure as hell didn’t talk to me about reasonable adjustments. He just told me I didn’t deserve the unhappiness I felt, kept on saying things like “it’s all in your head,” and in turn, I felt even worse.

The experience taught me to keep schtum about my mental health, or lack thereof, in the workplace.

It wasn’t until about a month ago that I had to disclose my mental health problems to my bosses again. Fortunately, I wasn’t still stuck in that pub. Unfortunately, the diagnoses had since amassed and I now had an overabundance of psychiatric and neurological acronyms.

The reason I had to disclose my mental health issues was the same: I couldn’t stop crying.

This time, though, things were different. I was booked a taxi home and told to take as much time off as I needed. I would still get paid. I would still have a job to go back to. I wouldn’t need to provide a sick note or anything. I just told them my mental health was throwing a wobbly and they didn’t pry any further.

I couldn’t have been more pleasantly surprised.

But in some ways, I shouldn’t have been surprised at all. Treating someone with a mental illness at work shouldn’t be any different from treating someone with a physical illness at work.

I was unlucky to have an unsupportive employer when I was so young, but lucky to have such a supportive employer so recently. However, my hope is that one day luck won’t play into it. One day, mental health issues will be taken as seriously as they should be, and no one will ever have to be told they don’t deserve the illness they never asked for in the first place.

 

 

Nine-Nine-Nine

ambulance

I was outside on a freezing night when my legs gave way.

With my Tourette’s, my knees do buckle sometimes and before I know it, I’m on the ground. Normally, I get right back up again, brush the mud off my knees, and carry on in much the same way as before.

This time, though, things were a little different. Unable to get back up again, my body began shaking and jerking. From the outside, it must have looked like I was either a) having some kind of seizure, or b) was blind drunk and collapsed on the floor.

Of course, what I was having was a tic attack: a wave of near-constant and uncontrollable tics.

Security were quick to come over and call an ambulance. When they arrived, over forty-five minutes had passed since I had been on the ground convulsing.

The first thing I heard paramedic say was, “This is not a seizure, I’ve seen a seizure.”

In response, what I didn’t say was: This isn’t a seizure in the epileptic sense. This is something called a tic seizure, a tic attack, a tic fit. It is a stream of intense, debilitating tics. There is a lack of literature on the subject so you may not be aware of the phenomenon. The episodes can last for hours and are exhausting.

Instead, what I said was: “FUCK!” “GET YOUR HANDS OFF ME!” “PISS HEAD!”.

“Come on, stop it,” the paramedic said as he hauled me to my feet and my legs buckled for the umpteenth time.

Stop it. Just stop it. The times people have told me to just stop it, to just shut up, to just “think of the bad word in my head instead of saying it out loud”.

Funnily enough, Tourette’s doesn’t work that way. I continued to shake and groan whilst the paramedics started to drag me home.

“You can walk, I know you can walk,” the paramedic said.

I couldn’t walk. Well, I could. But for like two steps before my legs gave way again.

The five-minute journey home took God knows how long.

It was an upsetting experience, to say the least. The lack of empathy and understanding and knowledge was quite frankly shocking.

“You could have been kinder,” I said to them, as we crossed the threshold to my flat, by which time I had regained some of my ability to talk. Perhaps it was rude of me to say to two extremely tired, over-worked and under-paid paramedics, but it was true: they could have been kinder.

“We got you home,” was their response.

Yes, they had got me home, but they had literally dragged me instead of using the wheelchair in the back of their ambulance.

Yes, they had got me home, but now all I wanted to do was cry all night.

Yes, they had got me home, but two strangers off the street would have probably been nicer than they had been.

Now, if someone ever suggests calling nine-nine-nine for one of my tic attacks, I know what to do: snatch the phone off them and throw it into the river.

The reason being: the awareness and understanding just isn’t there. People just don’t get Tourette’s, medics included.

No, You Don’t Have Tourette’s

white and black illustration

Sharon Osbourne, a 66-year-old TV personality has reportedly said “Sometimes I think I have Tourette’s without too much swearing.”

I have never met Sharon Osbourne, but I am willing to bet she doesn’t have Tourette’s.

First things first, you don’t have to swear to have Tourette’s. Most people – between 75 and 90 percent of people with Tourette’s – don’t experience coprolalia.

Secondly, Sharon Osborne doesn’t have Tourette’s. What she has is a condition called “verbal diarrhoea” – an affliction that causes people to talk utter crap.

Thirdly, everyone needs to stop using Tourette’s as an excuse for bad language.

Bad language and Tourette’s are not synonymous.

I have had numerous people tell me they think they or their boyfriend/partner/cat has Tourette’s because they swear so much. But swearing is a small part of an incredibly complicated condition – a condition which can be the source of physical pain, isolation, and unemployment, a condition which causes much more motor tics than it does vocal, a condition which has been ridiculed by celebrities and non-celebrities for far too long.

It’s time to stop using Tourette’s as an excuse for poor behaviour. If you really think you have Tourette’s – if your body and voice are doing things out of your control – then see your GP. If you think you swear a bit too much, then maybe just chill out.