I have trichotillomania

I felt like making a new topic because there aren’t any ones about trichotillomania. So, this is MY story. Everyone’s is different and hard in its own way, but this is mine. Don’t confuse it with anyone else’s because everyone is different.

I was born with trichotillomania. Basically, it’s a BFRB (body focused repetitive disorder) and it makes me pull out my hair. It affects up to 1% of the population, yet it’s not talked about. Almost nobody knows what it is. (Google even spellchecks it to “trigonometrical” because it’s not talked about.) I had to cut my hair into a pixie cut because it got so bad. I developed depression and my anxiety got worse. I pulled out hair even from my pixie cut and now I wear a think headband to try to hide it, but it doesn’t work because I’m missing so much hair. A lot of my peers think I have cancer and it’s really hard because I don’t. I’m just a normal person who’s trying to get through this one hard time to continue living. It just sucks because I can’t participate in activities that my peers do just because of this. I was invited by some friends who don’t know about my illness to go to a lake and pool tomorrow but I think I’ll just have to stay on shore because I’m too scared to take off my headband to go in the water. I want to be brave enough to just take it off and face everything as myself and stop using my headband as a shield from cruel comments, but I can’t. I’m just going through a hard time. I just want to be considered “normal”. I don’t want to have an amazing success story or whatever, I just want to be ordinary and live my life without constantly being judged for my hair. Anyway, I kinda just needed a place to rant because I don’t want to burden anyone else.

If you have trichotillomania and want to talk to someone else who just understands, please leave a reply or message me on here and I will get back to you ASAP.

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Its good place to share your story!

But you should try to share with a close friends, family or anyone you are close too and then eventally you will confitend enough be more open about. I know not easy thing to talk with people, but their are people that are open minded and kind hearted. Again, take you time with it, like I said talk to close friends or family, you dont have tell every single person. Mayve try get a stuff tiny bear or something to pull hair, so focus release that anxitey.

I have addication self abuse where i have punch myself in the head and it is embrassing and people think im mental crazy. I hoping and trying to over come too. You can get better it just take time.

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Firstly sorry to hear about your disorder, im one of the people who had never heard of it. I have pretty bad ocd and social anxiety amongst other things and that causes me to bite on my fingers sometimes to the point of bleeding so i kinda get the not being able to control something. Also started going bald at 19 so with the social anxiety i always wear a hat, and have for a very long time. Without it the anxiety gets worse and feels like im bare naked in public with everyone looking, but i know thats just who i am and logically i realize i wouldn’t lose established friends from my hair but i relate. Its hard but tell you what you go have fun, enjoy it without the headband and ill go without my hat.

Hello @horseskdc !

Thank you for reaching out and sharing your story to the HeartSupport forums.

Thank you for raising awareness for trichotillomania, and for sharing your journey and your personal struggles.

While I don’t know what you look like, I can say that without a doubt you are an absolutely beautiful person inside and out.

You say your peers don’t understand. Have you tried educating them about it? Opening a conversation about it? It may seem silly, but sometimes opening a conversation can create a world of a difference. And if you have tried this, I would love to suggest you do it again. Tell them that this is important to you. That you don’t have cancer, you have trichotillomania. You can even link them to youtube videos (there’s one youtuber, Beckie Jane Brown, that I myself learned about trichotillomania from). Educating people on things gives you a chance to explain the disorder and a chance for them to better understand it.

You say you can’t participate in activities, but you can. I know it feels hard, impossible even, but you have the power to choose. You are without a doubt a brave individual. Maybe start with small steps; go to the mall, or go on adventures with friends. Get used to going out and embracing who you are. Go to the lake and pool, go swimming. Go have fun!, if you feel comfortable, of course.

You are normal. Sure, you have trichotillomania, but that does not define you. What does define you are the things you love to do; your hobbies and your passions. Your disorder does not define you. Live your life however you want, and share your stories along the way (if you want). Live your life. You can’t let your disorder control you. I know it sounds hard not to, but you’ve got this. One day at a time, one step at a time.

You are loved and appreciated. You are stronger than you know. Take care of yourself, and again, thank you for sharing your story.

I know how you feel,
I myself am a cutter. I’m a guy, so I don’t really talk about this, and I feel safer behind a screen. I feel like I’m crazy sometimes. When my Dad found out, he just looked at me, then told me he was going to send me to a hellhole, my Mom’s. He caught me multiple times after that, and would always flipped out. Saying I was an attention Seeker, I was Useless, and that I was not needed, he had other kids that would do what an Idiot like me couldn’t. The last time he caught me, he told me after I told him why I cutted myself, because of the words that he said among other things, was this “All those things I said… They are true. Don’t ever forget that”. Needless to say, he hasn’t seen me cut since, but I still cut myself. Understand this horseskdc… most normally people are complete dicks to people that are different then them. There are people out there even if they are normal that will understand and love you… but the ignorant fools are who you need the ignore
Thank you for listening,
Jason

Hey @horseskdc Here is our video response with our guest @sweet_anita Hold Fast.

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Hey i honestly have thought ive struggled with this myself too, i started in middle school although I’m not sure if trichotillomania is exactly what it is. I haven’t been diagnosed but i constantly bend and pull my eyelashes specifically. It’s as habitual as tapping on a table or shaking your leg. While I haven’t gone through this to your extent I can relate still, I get weird looks and questions constantly. Not knowing how to reply because it’s just something I do. Know that you are so loved and beautiful just the way you are and I’m so sorry you have to deal with this.