mental health · trich

My Doctor Had to Google My Disorder (or ‘Why Having Trichotillomania Sucks’)

As I sit in the general practitioner’s room, I scratch at the frayed material of the seat beneath me and hear my heartbeat in my ears as I wait to finally, finally be fixed.

The mental health consultant I’m seeing has been assigned to me through a series of phone calls, appointments, and waiting lists. She’s young, with dark and thin – but kind- features that I immediately trust, despite the fear she instils within me. It’s not her, just her job.

The clock on the peeling surgery wall ticks loudly and this moment seems to go on forever. Why isn’t she saying anything? What’s taking so long? Have they lost my information? Will I have to start all over again?

Suddenly, she speaks, but not in the hopeful, happy way a patient should always hope:

“Unfortunately, Jess… we don’t offer any set treatment plans for what you’ve been referred with on the NHS. Now, you could go private, but…”

Her words start to fade out as she speaks of private (extortionate) clinics, recommended books I should try, and trying to get across just how how sorry she is for my trouble. I thank her. I smile. I say “It’s not your fault, but thank you” about five times before I leave the room and finally fully understand what it is that’s been the case all along.

I am nineteen years old and I’ve pulled out my hair for over a decade now. In all this time, I’ve never sought help for my disorder. Not because I didn’t want it, but because in the end, they couldn’t even give it to me.

X X X

About ten years ago, on a slow and stuffy sick day from my busy life as a year four pupil, I was pulling my eyelashes while watching TV.

I didn’t notice Mum was staring until she spoke; “What are you doing?”

“Um,” Eight year old me said, “I don’t know.”

“Well, stop it. I thought I noticed it the other day, you’ll have no eyelashes left if you carry on.”

“Okay.”

And that was the first time I ever remember pulling out my eyelashes. Strictly speaking, that’s the first time I ever remember myself having anything to do with Trichotillomania, but of course I didn’t know that word until much, much later. From there, the rest is just one long, hairy history.

Trichotillomania (or ‘Trich’) is known as a type of ‘BFRB’ (or body-focused repetitive behaviour) as well as an ICD (Impulse Control Disorder), but is classified in the Diagnostic and Statistical Manual of Mental Disorders (5th Edition) as an Obsessive Compulsive Disorder. It is described as a condition where the sufferer recurrently pulls hair out from any area within their own body. The most common problem-areas include the scalp, eyelashes, eye-brows, and pubic area. This hair pulling often results in noticeable bald patches in the affected areas, which often lead to further mental health issues such as low self-esteem, anxiety and even depression.

 

There it is. In medical terms, the problem I’ve been faced with for over a decade. Out there for the world to see. Of course, it was always out there for the world to see, if the world knew where to look. But that’s the problem, it doesn’t.

In the past ten years, there are many people I have had to explain my ‘condition’ to, from friends and family to doctors and (multiple) counsellors. Each one of these people who have suddenly shared knowledge of the most intimate parts of my shameful-self, who had no prior knowledge of this affliction – and the likelihood is that they never would have if it weren’t for me. Which is, actually, quite daunting.

In all actuality, this is the problem thousands of people with BFRBs across the world face: awareness. It’s so rare to find anyone who has heard of them before (whether that be Trichotillomania, Dermatillomania, or any others). It’s so rare, in fact, that a few months ago I was told by an NHS practitioner that there were no treatment plans in place for my disorder (something that has affected me for more than half my life and shows no signs of stopping), something that affects an estimated 0.6%-1% of the general population. No treatment plan or expertise, for something that potentially affects one in every one hundred people. And it’s all down to exposure. Awareness. Knowledge.

This gap in awareness for conditions such as Trich and Derma are the reason why foundations, charities and organisations such as The TLC Foundation for BFRBs, and the National Organization for Rare Diseases exist, to really get a conversation started for these disorders and, from this, to start getting help to those who need it. Help means research. Help means funds for research. And funds for research means visibility.

From the first to the seventh of October every year, the TLC Foundation for BFRBs hosts BFRB Awareness Week, where members, BFRB sufferers and allies can share their knowledge and experiences online and across the world. Most years there is a specific slogan and campaign created that influencers across the globe use on their own platforms, ranging from blogs to YouTube channels to other social media platforms. Which takes us to today, and this piece of writing.

This year I’m finally getting involved with BFRB Awareness Week and showing my true, bald colours.

This isn’t a cry for help, not any more. One day I will get the help that everyone who pulls or picks or scratches deserves, but that’s not today. Today, I just want to let you know.

I just want to let you know that Trichotillomania exists. Whether you’ve heard of it, seen it, or live with it: it exists. I want to let you know that it’s not a phase, or a habit, or a weird quirk. I want to let you know that there’s no known cause just yet. Which also means there’s no sure-fire cure. Yet.

I want to let you know that I’m glad you’re reading this. That I’m grateful for your listening ear. That someone you know (maybe me, maybe not) could have Trich, or any other type of BFRB, and all they want is your support. We don’t want your advice, unless you are an actual mental health or medical professional, and we certainly don’t want to hear the words “just stop”. Today, all we’re asking for is an open mind.

We just want you to know: Trich is real. So is Derma. And so is every other BFRB out there, some that may not even be known yet. They’re real, they need awareness, and they really fucking suck.

‘Til next time,

Jess x

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2 thoughts on “My Doctor Had to Google My Disorder (or ‘Why Having Trichotillomania Sucks’)

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