Trichotillomania Awareness (long, but please find time to read)

[Faster]

During the summer of 1965, at the age of 13, I experienced the onset of a little known disorder that would come to define those still early years of my life and remains with me to this day. Over the past year however, Trichotillomania has lost much of it's power over me.

Trichotillomania (TTM) is chronic repetitive hair pulling. It is a disorder that causes people to literally pull out their hair. Sites include scalp, eyelashes, eyebrows or any other part of the body. It is currently classified as an impulse control disorder, however assigning a specific category in which TTM can be placed is still a matter of much debate among researchers and clinicians. Recent research suggests that this impulsive action has many of the characteristics of other obsessive control disorders (OCDs), body- focused repetitive behavior and Tourette's syndrome. Those are the clinical classifications and gratefully, there are many highly talented scientists and researchers that continue to focus their skills on learning more about it and how to treat it.

TTM most often begins at the ages of 11 to 13, years which are very important in a person's life. I don't recall the month or exact year in which mine began. The most clear recollection I have is at first one of wonder, surprise and confusion towards myself. Also, of course, fear. A numbing, stomach clenching fear as the sense that I was crazy overcame me. I didn't dare to tell anyone what I was doing. I didn't want my Mom and Dad, my brother and sister to think, or rather know, I was crazy. The risk of their love lost, or maybe their revulsion of me was too much to bear. I couldn't understand what was making me pull the hair out my head and I COULDN'T STOP!!! How could anyone else understand when I couldn't

I was never a very extroverted child but I quickly and easily responded to warmth that I detected from people and I enjoyed raising my hand in school to answer questions posed by my teachers. Being asked to come to the front of the class to work out a simple math or spelling lesson had prompted that fun/awkward feeling of one receiving "special attention", being seen as one out of a group of others. Once my Trichotillomania had progressed to the point in which I had visible bald spots on my scalp, that same attention became a threat. In response to the none too subtle comments and jeers from my classmates..." Look at his head!"...."What's happening to him?"...my hand stayed at my side in the classroom, my eyes averted when my teacher scanned the class for a volunteer to go to the chalkboard. Even when a classmate in my vicinity spoke up to answer a question, I would shrink, with my heart racing with anxiety as all heads in the room turned in our direction.

Adults also found it difficult to not stare. I didn't fear taunts or ridicule from them, but I would become tremulous when I saw them gazing at my scalp and I'd turn from them as I saw them struggle with whether or not to ask me a question about it. At this point, I couldn't discern concern from curiosity. The former was hard to believe, the latter all too common. My shame and humiliation were literally visible to everyone.

Several years later, in my High School years, my chronic hair pulling slowed and almost stopped completely.

As I reversed the social development which had just barely begun, I developed traits that are still with me. I am a 56 year old man now. Still, I'm hesitant to initiate first contact with people. Instead I step back warily, watching a person who is speaking to me or walking towards me. Initially, I prefer to stand on the periphery of a group, staying in the background until I feel I am in a safe environment. This, even as my TTM, is under control and not visible. Once I detect a person's genuine interest and warmth towards me, I react with an almost total devotion, over compensating and thus pushing them away. I have to walk and interact among others very carefully, maintaining very deliberate, conscious and measured relationships.

Over the past year, I began working through personal issues with a group of people in a very informal setting. Our group leader encouraged open communication among us and I decided that for the first time in almost 40 years, I would actually say it out loud and tell a group of my peers about what I had done.

These people were not repulsed by my story, but instead were supportive and encouraging. I felt a lot of confusion on their part, and some genuine curiosity, but led through discussions with them, I could feel the burden of keeping my Trichotillomania a secret begin to break apart. Speaking of it, actually telling someone, face to face about it, diminished it's power over me after all these years.

I also became more active a national organization called the Trichotillomania Learning Center (TLC) and began to work on ways to make people aware of this destructive disorder. As my pain lessens, I know that another child's pain is about to begin. It has been determined that 100% of teachers will have a child with Trichotillomania in their classroom at some point in their career, so it is important that educators be made aware of the signs of TTM and be able to gather resources for the child. School nurses and Guidance Counselors should know of this disorder. Barber shops and salons should be aware so that children or even adults suffering from TTM can use their services without being self conscious or afraid of insensitive questions. (I recall a barber asking me if someone was shaving my head as punishment and asking what I did to deserve it.) TLC has educational materials available to assist in these efforts.

Last year, Governor Patrick granted my request that he issue a State Proclamation designating the week of October 1 - 7 as Trichotillomania Awareness Week in Massachusetts. I've requested that he do so again this year and I've been told he will. Progress is being made. For me, all these years later, the pain is remembered but not felt as strongly as it once did. I'm replacing suffering with relief. What was once my unspeakable secret is now a subject that I can barely keep from talking about. I hope public awareness provides relief for a child that is unknowingly prone to Trichotillomania and is still a year or so away from it's beginning.

[TopazLover, BSN, RN]

Thank you for your open sharing of this painful part of your history. I remember going to school with someone like this and saw her ostracized as a result of it. Obviously I did not know what it was , but instinctively knew it was not her fault.

Again, thank you for sharing.

[nebrgirl]

Thanks Faster for sharing, and what a wonderful place to share your exprience as I'm sure many parents may seek out medical attention for their child. Thank goodness that you have found some relief and some comfort.

nebrgirl

[Nidawi]

faster,

[color=#483d8b] thank you for sharing about ttm. i think it's wonderful that you're feeling better about having this, and using your experience to help educate others. being teased and tormented as a child is devastating. children are very cruel. i also think it's wonderful that governer patrick has done as you requested, so that more people may learn about this disorder!

[chenoaspirit, ASN, RN]

My best friend has this. She has pulled her hair out for so long, now its thin and has small bald spots. She would search and find a hair with a rough spot, pull it, then break it in half. That "snapping" sound is what she said she liked. She still does it, has done it for years.

[Faster]

my best friend has this. she has pulled her hair out for so long, now its thin and has small bald spots. she would search and find a hair with a rough spot, pull it, then break it in half. that "snapping" sound is what she said she liked. she still does it, has done it for years.

the breaking of the hair in half is part of the disorder. some people with trich will bite the hair after it's been pulled and some just touch the pulled hair to their lip.

if your friend wants information and/or support, she could contact this person. leslie is a great resource.

contact leslie at tlc: [email protected] or 831-457-1004

[AlabamaBelle]

Thank you from the mom of a 19 year old daughter who has had bouts of Trichotillomania since she was around 10 years old. She has a long, complicated medical history and this was just anothe manifestation of her many disorders. She would obsess over a "feel" to her hair, pull, pull and finally pull out large sections. This would feed other insecurities, and on and on it went.

Thankfully, we have finally (I hope) found a medication regimen that seems to be helping a lot.

Again, thank you for such an insight! It helps me understand her!

Cindy

[maire, ASN, RN]

Thank you for your post. My 13 yr old daughter is currently going through this, and has been for the past 2-3 years. The poor child has no eyelashes...

We've taken her to a pediatrician, a counselor, you name it. I think one person had ever heard of TTM, so it is good to get the word out.

[AlabamaBelle]

Maire:

Have you tried a pediatric neurologist? She totally understood what was happening. I took some adjusting of meds, but we finally appear to be in a good place with regard to hair pulling. My daughter never pulled her eyelashes, but she did trim them several times.

[ka9inv]

Thanks for posting this and for your efforts. I have had TTM for over ten years but never found out until recently that it was a condition with a name, let alone that it can be treated. I wish I had known sooner. I'm just hoping some of the major damage I've done will grow back before I finish my preqs for the nursing program at my school...

[Faster]

Isn't it amazing when you finally learn that there is a name for this, and you aren't the only one that does it? My very best wishes for you.

[Faster]

maybe this will be helpful for you.

also. look up the trichotillomania learning center on the internet. excellent resource.

illinois

chicago, near downtown and/or northern suburbs

chicago area support group

the chicago-area support group is just getting started! this will be a free weekly group for adult and young adult hair pullers and skin pickers.

our first session is scheduled for sunday, november 16, from 3:30 pm until about 5:00 or 5:30. initial location: in west rogers park, near touhy and mccormick. (near evanston, skokie and lincolnwood, with easy highway access and free guest parking.) future locations tbd (suggestions welcome!)

for the latest details, directions, or to get involved, please contact lauren at [email protected]

we look forward to seeing you!

contact: lauren

email: [email protected]