Mental Health Living with trichotillomania - my story

[Samadhi]

This is really hard for me to write about, as up until about 6 months ago, only 4 people knew (apart from parents and husband) that I had this condition. A simple post in the forum I moderate (Second Opinion) regarding crocheting and how much I love it – and the reasons why I think i have grown to love the past time so very much, prompted the lovely Ocean to contact me to tell my story. Trichotillomania is a closely related impulsive-behavioural condition to Obsessive Compulsive Disorder. Taken from the US National Library of Medicine:

Trichotillomania is hair loss from repeated urges to pull or twist the hair until it breaks off. Patients are unable to stop this behavior, even as their hair becomes thinner.

Taken from Wikipedia:

Trichotillomania, which is classified as an impulse control disorder by DSM-IV, is the compulsive urge to pull out one's own hair leading to noticeable hair loss, distress, and social or functional impairment. It is often chronic and difficult to treat.[1]

Trichotillomania may be present in infants, but the peak age of onset is 9 to 13. It may be triggered by depression or stress. Due to social implications the disorder is often unreported and it is difficult to accurately predict its prevalence; the lifetime prevalence is estimated to be between 0.6% (overall) and may be as high as 1.5% (in males) to 3.4% (in females).

The name, coined by French dermatologist François Henri Hallopeau, derives from the Greek: trich- (hair), till(en) (to pull), and mania ("an abnormal love for a specific object, place, or action").[2]

I am 33 and have trichotillomania. My area of impulse was/is my eyebrows. I don’t really specifically remember when i started hair pulling, and I don’t remember doing it as a child, but know I did – from grade 5 school and other photos, the hair loss around the ends of my eyebrows was noticeable. I remember some girls at school commenting on it (there was a rumour that i’d shaved my eyebrows to shape them) and i remember moreso my family commenting on it.

I saw a child psychologist for some time around this age (something pretty shaping occurred at around this time) and i have absolutely no recollection of that period. My parents don’t talk about it a lot either unless they are prodded and then it’s vague. Anyway, my story isnt’ about that, and I have no feelings either way regarding that, i have worked through those and am now accepting of that aspect of my childhood.

What I want to talk about is how this condition has affected me. I have gone for long periods with no symptoms, but there have been times where my pulling has gotten so bad, Ive had to pencil in parts of my eyebrows – and i’m talking about as an adult. I’ve always had a fixation/fascination with the shape of my eyebrows (and others too), how long they are, whether they have been shaped correctly, are they too thick/too thin... it all stems from mine having to be *perfect* because at times, they have hardly been there. Stress will trigger periods of hair pulling, but other times it’s really just habit – reading a book, watching TV...

My husband is amazing with it. It took a lot of guts to tell him about it (i’m sure that he noticed me doing it as i became more comfortable around him, even if it was more than likely trying to hide it lol). I finally spoke to him about it one night while we were on MDMA, and it was SO good to finally be open about it. He is great when he notices me doing it – he’ll just tap me on my arm or something like that. I used to get really upset at him for it but realise now that it stemmed from embarrassment – this is a REALLY embarrassing problem – having no eyebrows is embarrassing. He at times likens it to nail biting; i also used to bite my nails, and am now so proud of the fact that i have really lovely, well-kept nails that i only rub ointment on to keep them looking good.

It was only during therapy in my early 20s for other issues that this was given a name, and even having that really helped. I still had symptoms, but i have really found ways to combat it. Crochet is one of them – i do it all the time – watching TV, on the train, at a friend’s house, even when my husband and I drive to/from work – it’s like second-nature to me. I really feel that this has gone a long way to keeping my hands busy and i just don’t think about anything else. I also think it’s training my mind to not think about and/or resist the urge to pull at my hair.... because in times of stress, it’s not just something i do- there is a huge urge that is released once you feel a hair being pulled out.

I have always kept an eyebrow pencil in my purse, at home, at work... i’ve never not done that. I remember my mum filling in my eyebrows with pencil when I used to roller-skate, before a performance... these are the kinds of things that i remember about my condition, it’s just something i’ve grown to live with.

There are so many conditions that are freely spoken about – addiction, eating disorders, cutting and other forms of self-harm, but this specific condition is really quite rare, and for some reason, very taboo...

I know a lot of people on bluelight – i’ve been a member for almost 11 years – both in real life and my online friends – knowing that these people will read this and know about it is frankly terrifying, but if i can help at least 1 person to know that they are not alone, it will be worth it.

Samadhi

For those interested, here is some further reading:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002485/
http://en.wikipedia.org/wiki/Trichotillomania
http://www.trich.org/
http://www.psychforums.com/trichotillomania/

 

[TINK]

I used to work with a very successful clothing buyer for for a retail company that had over 400 hundred stores nation wide. She sufferred from this condition as well. She refused to get any sort of help and was in denial the whole time. She wore hats even when it was 110 degrees out and she would not let the cleaners come emplty her garbage for fear they would see her hair. By the time she was 30 years old she was completely bald. TBH I dunno if she ever got treatment or not but I can empathize with what you are going through after watching what she went through.

YOU ARE WONDERFUL AMAZING PERSON AND THIS TOO SHALL PASS. You are a strong person, seek help and get this under control. I know in my hearth you can get pass this issue. If there has been one this I have learned in the nut house over the last 3 weeks is that we are all WORKS IN PROGRESS forever evolving day by day.

hugs miss chatting with you, hope things are well.

 

[Samadhi]

I miss chatting with you too, lovely TINK. Let's organise a chat time over fb, ok? Thank you for your words, i appreciate it.

I'm actually ok, for the most part - like i said, the crocheting has helped and really just being constantly aware of my behaviour. Having longer nails helps (you can't grasp hair easily with longer nails), and so i keep my nails longer. I also get my eyebrows waxed regularly, to keep their shape and to stop them from looking 'messy' - if they start looking that way, i can "feel" it, and the urge to pull at them gets stronger... One way i can describe it is just feeling hyper aware that my eyebrows are on my face. If i brush hair out of my face, and i accidentally touch my eyebrow hairs, i know instantly that they are out of place and have to brush them back, if i don't, i feel fucking weird until i fix it. It literally gives me shivers when people don't have looked-after eyebrows. I want to say as an addendum to that, that it's all me - and has nothing to do with how people choose to style/not style their brows! It's my mania, after all

You are right, though - we are constant works-in-progress, we falter and fuck up, and we get back up and keep going - we are all imperfect, but that's what makes us all so very beautiful

 

[Mel22]

My partner suffers from this condition also, I am going to show him this. My partner's condition is more or less under control at the moment, and he also suffers from OCD. I would elaborate, but it's really not my story to tell - I just posted to congratulate you on sharing your story, and to let you know that it seems like you're doing great! Well done

 

[Samadhi]

Please do, Mel

I wanted to add that if anyone would like to send me a private message to chat rather than respond in the thread, i'm more than happy to chat about it. I still pull occasionally, and over the past few years, i've had a shitload of stress in my life, but really, i'm very proud of the fact that my episodes are happening less frequently, and a present, my eyebrows look really great - without any pencil assistance! :D

 

[TINK]

I realized that i do this thing with my cuticles. I can't stop picking at them, even when they start bleeding and hurt like crazy. I wonder if it is some sort of coping mechanism or OCD.

Just made me think of it.

 

[Dave]

^ I kind of do that too. It's the skin around my fingernails mostly, but I've always been a 'picker'. I'll just either get the urge to pick at my skin or do it unconsciously. To the point where it's pretty well always a couple of fingertips that are raw and sore. It was particularly bad when I had a severe breakout of eczema when I was 16, as I just couldn't leave the area alone. It's not trichotillomania, but it sounds similar.

Thanks for posting this Samhadi! I had never heard of this condition before, so this has been enlightening for me. It's also great to hear how people are able to manage their conditions in adaptive ways... gives me ideas for my own quirks

 

[ocean]

I am very glad you posted this Samadhi
I know for you it hasn't been something you shared much before so I'm sure when you were typing out that first post the Submit button might have been a little difficult
I know this is going to help others out there who feel just like you, who suffer from this condition and might not even know it.
I'm glad you have found a positive outlet through crocheting!
Thank you for sharing your story!

 

[bben]

i find that N-acetyl-cysteine helps trich alot, so do opiates. Glutamate modulation seems key. There is also a condition similar to trichtomania that involves consuming the hair or chewing it after plucking it out . The chewing part relieves anxiety as much as the pulling. Its called

TRICHOPHAGIA heres a link http://en.wikipedia.org/wiki/Trichophagia

 

[Captain.Heroin]

Thanks for sharing, I am sure it took a lot of courage for you to write this up.

Do you find therapy and/or medications help? I am happy to hear you have a great husband as a part of a support network.

 

[anonymousposter]

extreme trichotillomania

For those of you who are unaware of what trichotillomania is: a definition from The Mayo Clinic is as follows -

Trichotillomania is an irresistable urge to pull out hair from your scalp, eyebrows, or other areas of your body. Hair often pulling from the scalp often leaves patchy bald spots, which people with trichotillomania go to great lengths to disguise. For some people, trichotillomania may be mild and generally manageable. For others, the urge to pull hair is overwhelming and can be accompanied by considerable distress. Some treatment options have helped many people reduce their hair pulling or stop entirely.

I am suffering from extreme trichotillomania. I am a 28 yo. female. I have always, since I can remember, pull hairs from wherever I can find on my body, leaving myself bloody and crosseyed and looking like someone beat the shit out of me. I have to beg myself for hours to stop, with no end. Not one hour, I'm talking 8, 10, 12...I am hours late to places because I am digging and digging. It is extremely embarassing, I tell people my cat scratched my arms up, or I have severe acne on my face, or I have sensitive skin and a new rash has appeared. It is the only way that I can seem to relieve stress. I can't wait to get home from work so I can grab my tweezers and needle and sit in front of the mirror with the greatest sense of calmness and accomplishment I seem to get from pulling out hair from my body.

A little history - I became addicted to meth at the age of 18. As I said earlier, I have had trichotillomania since I can remember, which means long before I started using meth. Meth increases this disorder TEN FOLD. I thought it was bad before? Try getting away from the tweezers now. I successfully quit meth after one heavy year hard usage at 19. I am now 28 years old and a few months ago, somehow, after thinking about it every fucking day of my life since I quit at age 19, some stupid demon inside of me got the better of my brain and I got back into using meth. My body is TORE UP. From my toes to my forehead, I have picked at every ingrown hair you could imagine. I am so stressed out, I work 50 or more hours a week and on top of that, I am taking more than 16 credits in school right now. I made the excuse to get back onto meth "just so I can get through my schoolwork and homework." What a stupid thought that was. Of course, as you know the story goes, I am using all the time, always high.

Perhaps I am wondering if anyone can relate to this and is suffering through the same thing? I am aware that I should be and supervised by a doctor, but I refuse. It is so difficult for me to use medication because the medication makes me someone who I am not. Although it makes me a little more "balanced," it makes me boring and bland. I am not boring and bland. I am the life of the party. I am one of the funnier people that my friends know. I am off the wall, happy, loving, and hilarious. And then next month, I am buried in my bed, fantasizing each gruesome way I could kill myself. I can barely live with the "downs", but I can't live without the "ups." I figure, it's me. It's who I am, take it or leave it. But yet, each down seems to get a little more down, and one of these downs, I'm really going to go through with one of those deathly fantasies. However, the meth makes me happier than a pig in shit, for the most part. It actually seems to level me out, oddly. Except for the mania mixed with the meth makes for about 7 hours of sleep in 2 weeks which definitely makes me "slightly" loopy. (I use the term 'slightly' loosely.)

Please excuse my ramblings, I haven't really discussed this with anyone in a long time. Perhaps I just needed to get it off my chest. I'd enjoy hearing those who are suffering from the same thing, opinions, rants, or the fact that I am completley stupid and need to check myself into the nearest hospital.

 

[Dave]

Thanks for sharing your story! I could certainly imagine that a powerful stimulant like meth would severely increase compulsions. I don't have your compulsion, but I'm certainly a 'picker'-- I'll pick at bumps on my skin, ingrown hairs, cuticles, nails, scabs and what have you-- so I have a faint idea of what it must be like.

I do believe that we actually had a trichotillomania thread around here somewhere-- I'll go dig it up so that you could have the support of a few others with a similar situation.

Edit-- I've gone ahead and merged this thread with the other trichotillomania thread.

 

[herbavore]

Samadhi and anonymous, thank you so much for sharing your stories. I have had two friends that suffered from this compulsion and it is indeed a very taboo condition to talk about. You are both very brave.

Samadhi, I have used knitting and crocheting as a way to quell anxiety for years so I know what you mean about the effectiveness. You can't beat a treatment that actually gives you a warm fuzzy product as well!

 

[Jabberwocky]

thank you very much for sharing Samadhi and anonymous.

i have a similar problem- dermatillomania, which started when i was in recovery for another OCD like condition. it is confined to my lips (actually i've picked at these forever) and scalp so people can't often see it but i hate it, my head is full of scabs and i have small patches of no hair, random tufts from places i'd previously picked and have now healed etc. i am starting to worry as i have been having pain in the tips of my fingers recently which i attribute to the frequent pressue.

well, just wanted to thank the contributors to this thread, it was only just now by searching for trichotillomania, thinking it was somewhat similar to my problem, that i found out i'm not alone in being a disgusting scalp picking freak (sorry, i would not ever think that about anyone else with this condition, but its how i feel about myself). i will be looking into the suggestions made here, even having some ideas feels nice.

edit- question: my parents hate this behaviour because other than being unpleasant to watch, they equate it with a constant low level, not necessarily purposeful, form of self harm (understandable given my history). though its obviously not good for you i don't think its pyschologically similar to self harm, is it?

 

[Dave]

As a 'picker' myself, I'd actually guess that it might be. Causing physical pain to distract from emotional pain, while satisfying a compulsion, might be a form of maladaptive self-medication?

Just speculating based off my own experience.

 

[Adelady]

Thanks so much for sharing your experience with this condition. Although I knew I wasn't alone, finding someone here on BL, one of the few corners of the internet that I roam, really helps to make me feel better about things.
I will post further about my own experience with trichotillomania (and dermatillomania) in the near future, but for now a huge thank you and a lot of love your way
Keep smiling and take it easy Adelady

 

[Vaya]

Had no idea this thread existed until today, TBH.
Glad I found it.
Thanks for sharing your story, OP.

~ Vaya

 

[Maclark]

I'm a hair puller too. Started when I was about 9 yrs old. Very dysfunctional home situation! I could never understand why I did it to myself. Made life, especially as a young adult, very difficult. Used to think I was the only person in the world who did it! Wish I had gone for help back then but too ashamed. Can now understand why 'pride' get negative press! Thankfully, the urge to pull has lessened with age (60 now) and presumably the effects of various anti-depressant meds, especially Chlormipramine and being able to talk about it now - no one has been that shocked! Now go mainly for the crinkly coarse hairs. I pick at my cuticles too but don't, and never did, bite nails. You could say I have ended up with a bundle of mental health problems - anxiety and depression, ongoing insomnia (which made it impossible to carry on working), scared of people, was a heavy smoker, abused alcohol for 25 yrs+ - sober 2 mths+ at this time but now addicted to Zopiclone (sleeping tablet) and seeking help for it. Out of it all I would say it is the tricho which caused me the worst distress - affected my self confidence and esteem, trying to find and keep boyfriends, people in general noticing I was quite bald at times. Agorophobic at times. Maybe if I had gone for help when I was younger I wouldn't have ended up with some of the other problems. So younger people reading this, and if it applies to you, please try and find some help for this horrible affliction. My mum did take me to child psychiatrist who told her I would "grow out of it". If only she told him what things were really like at home but I think she did the classic thing of protecting the abuser at home.

 

[mornings]

Hi Samadhi

Its very courageous of you to open up like this about the disorder.
It's very important to share about it with others, and I'm really glad to see you did that. It goes a long way.
You also mentioned that 4 ppl knew about it already - which is great, many ppl out there keep it to themselves, and its a too heavy a weight to carry

Crochet is a very interesting coping method, never heard of it before, thanks for sharing this.
Here are some suggestions for treatment methods for trich - there's a lot that can be done today to treat it and stop - not merely cope.

And no, you're surely not alone. Wish you all the best!
/mornings.

ps just going to add this, cause its kinda relevant for this forum lol: try avoiding stimulants, adderral, ritalin etc. They have reputation of triggering trich and making it worse.