Texas article

'Trichster' finds comfort, help on Internet

By Gary Shanks
Staff Writer

Trichotillomania - it's enough to make you pull your own hair out.

While making glib statements about a debilitating condition may  seem cruel to
some, the "trichsters" - as they call themselves - often use   humor to combat this
secret obsessive compulsive disorder.  Tongue-in-cheek comments about this hair-pulling condition and
general camaraderie between trichsters is a fairly new phenomenon,  since it is generally
available only on the Internet. This new medium has provided a  means for those
with this compulsion to join in support of one another. Each day this site receives posted messages from at least 10  people, and most say the classic "My God. There's a name for what I do," according  to a local trich sufferer.

The disorder is beginning to make its way into mainstream  media, with recent
articles found in the May issue of Mademoiselle and in the Ann Landers column.

Trichsters have trouble explaining to their friends about the nature of their condition.
When a friend confides that they cannot feel comfortable in their home without
washing their hands for an hour - this elicits sympathy. If  another friend confides
that he pulls his own hair out one strand at a time - this elicits confusion, even fear
and distrust.

In most sufferers, there is a ritualized behavior that accompanies the hair pulling,
which usually involves scalp hair but the pulling of eyebrows or eyelashes is very
common among trichsters, sufferers said.  Each person afflicted with trich has his own ritual and own
prime spot for plucking  hairs. Often, time is taken to examine or single out a hair and
once plucked, the hair and root is closely examined and in some cases bitten.

Most professional caregivers have little clue as to the nature of trichotillomania.
Horror stories of bizarre diagnoses for the problem are a topic of much discussion
at Amanda van Rensburg's web site at http://home.intekom.com/jly2/   One woman was given haloperidol, which is used to treat those  breaks from reality. Another woman was told by her doctor to
"go to a bar and find a man."

Diagnoses for the cause have ranged from demon possession to suppressing memories of being molested as a child. The numbers associated with this disorder are listed on the site, although very few
studies have been conducted. One study showed that the disease might effect one in every 200 college women, according to a study of a group of college students. The condition is more common in women, but there are some male sufferers.  A mathematics professor in Oklahoma who suffers from trich
quotes a study showing 5 million to 8 million trich sufferers in the United
States. Her site is http://www.math.okstate.edu/~stephan/FAQ/html

One Midland woman who has found solace in her trichster friends on the Internet is Debbie Turner, who has suffered from trich since she was 3 or 4 years old, according to her father.  At this time her father noticed a bald patch on the back of her  head and asked if she had burned herself.  "I said 'no. I pulled it out,'" Ms. Turner said.  "It surprised him. It really, really surprised him," she said. Without knowing her condition had a name, Ms. Turner went  through school being teased by other children and misunderstood by doctors.  One physician who convinced himself that the condition was brought on by allergy actually gave Ms. Turner repeated injections in her scalp during her childhood, she said.  "I was humiliated a lot ... it was awful," she said.  Ms. Turner has a rather severe case of trich and spent her life
essentially hairless wearing a wig.  Having been married since 1981 with a house full of healthy,
happy children - Ms. Turner has grown more resilient to the opinions of others and   has shed her wig. 
"I wore a wig until about a month ago," she said. "I felt like I was living somebody else's life," she said.

The camaraderie she has received with others on the Internet  site also has given her the strength to come forward in hopes of providing the help  that was unavailable to her as a child. "There are a lot of us out there and they need help. Especially   the younger ones. Us older ones - we can deal with it," she said. While her husband has known about her problem for some time,  Ms. Turner never told her children until recently. "I just flat came out and said 'this is what happens,'" she said.  "My kids help me a lot - they are very supportive," she said.   For the most part, most of Ms. Turner's friends have stayed
close after hearing about her condition. "They were wonderful. Of course, nobody understood it," she said.

On the Web sites, trichsters gather and discuss their trials and their triumphs. Most of those who post their thoughts are professionals, and their  own research may make the Internet the world's best resource for people  suffering from this condition.   "There's lawyers, doctors - lots of health care people ... all  of us seem to be fairly intelligent," she said.  "It's the most astounding group of people I've ever met,"  another local trich sufferer said.

The humor and support of the Web sites allow Ms. Turner to  fight the depression associated with some trich sufferers, and to use humor to fight the rage that once accompanied the pulling. Much of the discussion is on ways to avoid pulling hair, and   Ms. Turner now has a downy covering of new growth on her head. "I went to the site and I stopped pulling the next day," she  said. This is a tremendous struggle, however, and Ms. Turner admits that she is  far from "pull free."   "These sites are great. The people there are honest. Sometimes  brutally honest," she said.

The medical definition of trichotillomania is fairly  straightforward. One of these is posted on the Internet site: http://www.Fairlite.com/trich
"The essential feature of Trichotillomania is the recurrent  pulling out of one's own hair that results in noticeable hair loss (Criterion A) Hair  pulling may occur in brief episodes scattered throughout the day or in less frequent but  more sustained periods that can continue for hours. Stressful circumstances
frequently increase hair-pulling behavior, but increased hair pulling also occurs in states of relaxation
and distraction (e.g., when reading a book or watching  television). An increased sense of tension is present immediately before pulling out the  hair (Criterion B). For some, tension does not necessarily precede the act but is  attempts to resist the urge. There is gratification, pleasure,  or a sense of relief
when pulling out the hair (Criterion C).

There are medications available to treat this (and other  obsessive compulsive disorders); these medications help a large number of trich  sufferers. Trichsters warn, however, that the medications are not a quick fix - other  means to change the behavior must be used.

Many have found that taking potassium helps reduce the urge and  some use the herb St. John's Wart. In addition, there is a diet that has  helped some people.

Many people are unable to understand the desire to pull or the  inability to resist the desire, Ms. van Rensburg explained.  Ms. van Rensburg provides two metaphors to help those who do  not suffer from
trich to understand the desire to pull.

"It is like when a fly walks over your face - is it possible  for you to leave it there and not wave it away? It takes the same amount of effort not to  pull when everything in you urges you to do so?

"To me, an urge is a very physical thing. Without urges, I still have the need to pull out my hair But I can control it. It's like when you have a need to eat chocolates, sweets etc.  "You say no, even though you would still like to eat some more  of it. But when I get an urge - nothing will keep me away from those sweets!    When I get an urge, it is almost physically impossible not to pull.," she said.

* * *

Perhaps another way to understand the condition is from a short  ditty written by an
attorney in New York for her trichster friends, entitled:  "Heavy Lash Porn":

"Attention, new growth! Let me introduce myself. I am Sgt.  Nails. I will help you
stay in line and grow right. This is my assistant PFC.  Tweezers.

"During your training you WILL learn how to be good lashes and  to grow in
straight formation. Anyone who will not conform will face the  consequences.

"Hey you! You're LEANING! STRAIGHTEN UP! (pluck).

"You guys over there, you are off of the lash line. If there is  one thing I WILL
NOT tolerate it is someone off of the lash line. (pluck). Oops  wrong one (pluck).

"I hope you understand, follow the rules and you live get out  of line and.....

"You're a stubby little fellow, think you're pretty stiff don't  you, well I WON'T
HAVE IT!! (pluck) Oops (pluck), oops (pluck), oops. That's it  PFC. Tweezers
get this stubby fellow out of here! (pluck), and while you are  here get him, and
him, AND HIM!!!!!

"WHAT ARE YOU DOING?? Bending down and poking the lower lid is STRICTLY forbidden (pluck), (pluck), (pluck).

"I know one of you is causing me a sore spot, and I will not  give up until I find
you, (pluck), (pluck), (pluck). PFC. Tweezers, find that sore  spot NOW! (pluck),
(pluck) .......

"Let's see if a cold soak will cool you guys off.

"It still feels like something isn't right. What are you doing above the lash line! (pluck), and you, (pluck), PFC. TWEEZERS!, (pluck), (pluck).

"I notice that you upper lashes and lower lashes keep touching.  Whose fault is it,
upper or lower? You there, on the lower line, (pluck), oops.  Then it must be you
(pluck), or you, or you, or you, or YOU!

"I know one of you lashes is responsible for the sore spot, it must be you, (pluck),
no (pluck).

"You guys are in the line of vision, very irritating , I WILL  NOT TOLERATE
IT!!! (pluck), (pluck), (pluck).

"I know the trouble maker is here somewhere. PFC. tweezers, dig  that guy out of
there.

"You there, you're all by your self over there, (pluck). Oh!  Much better. I knew
you were there somewhere.

"You are a sorry looking group, but I think you have learned  your lesson for the
day. There will be some new growth in a few weeks, we will  start again then."