Personal Post: Being a Writer With Trichotillomania

This is my first personal post, and it has not been easy to write. But it’s something I feel the need to share, because it’s about something so tied up with my writing life that it feels wrong to keep it a secret. Also, in posting this I might be able to comfort someone going through a similar thing and help them to understand that they’re not alone.

First, I’m going to ask you to do a bit of thinking.

Image you’re doing something you love. A project, hobby, reading a book, playing a game, anything. But then there’s something in your eye. Or, you think there is. Your hand automatically tries to remove it, prodding around in the sticky tear duct and flicking at your eyelashes. You blink and find that it’s gone, but you can’t move your hand away. Your fingers are playing with your eyelashes, nipping at them like a puppy with a toy. Your brain screams ‘no! no! no!’ But you can’t hear it. You can’t stop. You stand up, pacing the room with your hands clenched into fists. You tell yourself to calm down, that everything is fine, that you’re strong and you can beat this. Sometimes you do.

But the other times…

You give in. The desire to grab your hair becomes uncontrollable. Painful, and merciless. You have no choice. Your hand drifts back towards your eye of its own accord. Just one. One won’t make a difference. You can limit it to that. The sharp tug and twinge of pain is satisfying. The eyelash falls to the ground. You don’t make a wish on it; you spent your allowance many years ago. You watch it fall and feel better, but there’s another one. Just next to the one you pulled out. It feels odd now, exposed. Two won’t make a difference… Oh, oops. You missed it, got a different one instead. Better try again…

Drag yourself over to a mirror and force yourself to look at the damage. Behold the ugly gap on your eyelid. Feeling that you’ve let yourself down, and that your family and friends will notice and that you’ve disappointed them. You look back at the thing you were doing and don’t have the courage to carry on, in case another attack comes. What once brought you joy, now you hate. You’re a failure. You feel sick.

Then imagine the next day. Getting up, having breakfast, showering. Steeling yourself. Doing something new and having to face the same fight again.

This is my reality.

I have from a compulsive behaviour disorder known as Trichotillomania. It’s related to OCD and other anxiety based conditions. I’ve struggled with it for as long as I can remember; hair pulling is just something I’ve always done. I don’t know when, or why, it started happening. I didn’t even discover the name ‘Trichotillomania’ until I was 17. When I was a child, my parents didn’t think of it as anything more than a silly habit I would grow out of. As a teenager, I grew weary of everyone telling me to ‘just stop it!’ or ‘you really need to grow some eyelashes’ as though lacking them was an immense flaw in my character. Like I needed them to be normal and accepted. No-one, myself included, understood why I pulled my hair out in the first place and why I couldn’t stop doing it. Reaching my wit’s end and turning to Google, it didn’t take me long to discover that I wasn’t alone and that I had an genuine medical condition. I burst into tears of relief. I wasn’t a freak. I wasn’t the only person in the world who suffered like this. I had a real condition. I could name it. I could FINALLY give people a reason. There wasn’t anything wrong with me, I just had Trichotillomania.

The liberation which came with learning this improved my confidence. I began to talk more about my hair pulling, and be less ashamed of it. Even so, many people still didn’t understand it. As I’ve grown older, I’ve learned to recognise situations which may trigger an attack. I can go for days, or even weeks, without pulling, as opposed to when I was younger and would pull every day. But the urge always returns eventually, and if I’m not careful all the progress I’ve made can be destroyed in an instant. I’ve accepted that I will never be free of it. Trich is so integral to my life, I can almost get defensive about it. I hate it, but at the same time, it’s a defining part of who I am. I wouldn’t be me if I didn’t have hair pulling attacks.

Trichotillomania
Artwork by Sharp Pencil Studio, for the Trichotillomania awareness campaign HelpMe2Stop.

Of course, I was bullied at school. Other kids would ask me why I didn’t have eyelashes, and I’d shrug and pretend I didn’t know. If they caught me pulling they would laugh and whisper behind my back. One time in class I heard a boy behind me murmuring to a new pupil about the girl over there who pulls out her own hair. The new guy sneered in disbelief, but then later on he saw the evidence. Another face watching me like I was a circus attraction. Those bullies used to upset me, but now I pity them. I can’t imagine what it must be like to be so narrow-minded and cruel. To not even think to ask someone if they’re okay, to just automatically decide to taunt them because they’re different. But if anything I should thank them, because their cruelty makes me appreciate the kind people who now surround me far more.

By its very nature, Trichotillomania erodes your self confidence. Its makes you believe you’re ugly and that no-one will want you. On bad days, I find myself avoiding people’s eyes during conversation for fear that they will notice. When writing, if I pause to think or research something I’m always courting an imminent attack. Sometimes Trich makes me feel worthless, like I’m never going to get anywhere because I just physically can’t do anything. But I love writing, and I will keep fighting for it no matter how many times I lose. Eyelashes are now my currency. They’re the price I pay for each article I complete, all the positive feedback I get on this blog, and all the stories I tell. And all of those things are worth the cost. At university, I steeled myself enough to walk into seminars after Trich-y days and share my work with my classmates. None of them laughed or judged me—they just wanted to see what I had brought to workshop! Those wonderful people taught me that what I have to say, my words I continue to write, are more important than how much hair I have. Every. Single. Time.
Trichotillomania
Notes I write to myself on the inside covers of my exercise books
If you have just discovered Trichotillomania, then I’m going to ask you a favour. If you see anyone pulling out their hair, go up to them. Speak kind words. Ask them how they are. Tell them they’re beautiful, and that everything will be okay. There is enough pain in this world. We do not need to create more by judging each other.

If you also have Trichotillomania, then fair greetings to you, my fellow comrade. Look in the mirror. Smile. Write ‘don’t pull’ on your hand every morning to remind yourself. Be brave. Leave a comment on this post and say hello.

 

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Amelia Starling is a writer and folklorist. She graduated from the University of Winchester with a degree in Creative Writing, and is Senior Editor for Folklore Thursday. She loves travelling and collecting stories, and spent 15 months living in Japan doing this alongside teaching English. Amelia blogs about folklore and fairy tales at The Willow Web. You can follow her on Twitter @amyelize.

6 thoughts on “Personal Post: Being a Writer With Trichotillomania

  1. Hi Lorna! Oh wow, that is really weird, but at least we know now! And you're right, it does feel good to know that we're not alone. Thank you, and same. I'm sure we can support each other during the stress that is going to be third year! 🙂

  2. Hey Amy, I'm kinda late to the party here – I didn't know your blog address until now! I have trich as well, the eyebrow variety – isn't it weird how we've had so many classes together and not known? It really sucks to deal with, but it's so great to know that someone else in such close proximity to me knows how it feels! I'm (literally) always online if you want to chat 🙂

  3. This is such a wonderful post. You are undeniably and incredibly brave to be telling your story for the world to see. It takes so much courage to be so honest and sincere. I wish you all the best of luck with your future 🙂

  4. Thank you! I hope this reminds quite a few people, no-one deserves to suffer in silence. And I will definitely help him with the many more issues to come 😉

  5. Well done for writing such a personal post, I know how hard it is. I didn't actually know anything about Trichotillomania before so this post was really helpful. You're SO strong and it's great that you've found some coping techniques that work for you. <3

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