Debbie's Story

MY BATTLE WITH TRICHOTILLOMANIA

My name is Debbie, and I have been a Trichotillomania sufferer for about
15 years. Trichotillomania is an anxiety disorder that manifests itself
in the compulsive urge to pull ones hair, resulting in noticeable hair
loss. Hair pulling increases in stressful circumstances, but may also
occur in states of relaxation and distraction. My battle with
Trichotillomania has been a long and hard one, and as yet I have still
not overcome it. I especially want to share my story with other
sufferers, to let them know they are not alone, and to give more insight
to those researching this disorder. I recently found out that there are
between 6 to 8 million people affected by this compulsion in USA alone.
I certainly knew that there were a lot of Trichotillomania sufferers,
but was amazed at the statistics. The reason for this is that most of
us who have Trichotillomania are very secretive about our problem,
thinking that we are alone, but we forget that there are millions of
other people who have the same problem as ourselves.

So, if you are also a Trichotillomania sufferer, you are definitely not
alone!

The first time I pulled my hair was when I was about 12 years of age. I
was at Summer Camp and remember playing with my hair on my forehead, and
then eventually pulling a strand of hair out. It did hurt but at the
same time there was a strange feeling of comfort and relief. I cannot
remember what triggered the pulling at that time.

On many occasions I am unaware that I am pulling my hair. It has become
part of my daily routine and I often unconsciously pull my hair. Unlike
other sufferers, I have never had the desire to pull hair from my
eyebrows, eyelashes, or any other part of my body, except from the hair
on my head.

I strongly believe that my hair pulling resulted from my childhood and
family issues. This is illustrated by looking at my childhood.
I was raised in a family that was financially stable. I have two other
sisters and a brother. I am the youngest in the family and also a twin.
I am not sure exactly when my parents started noticing my hair loss, but
from the time they did, things got progressively worse. Actually to
this day I do not know how my brother and sisters discovered about my
hair problem, as I never personally confronted them about it. At home
my hair problem was never discussed......it was like a forbidden topic.

My parents have never talked to me about my hair problem. Since they
are driven by what society thinks, I feel they are ashamed and disgusted
by me. They have never accepted the reality of the problem nor the fact
that a problem exists and hence have done very little and given me no
support in finding a solution to this disorder which plays such a vital
role in my life and daily existence. However, I am fortunate in that I
am able to talk to my siblings about it, and find it very comforting
that they still accept me with my problem and that we can openly talk
about it. My father is a doctor, and for more than 30 years that he has
practiced medicine, he had never encountered a patient with
Trichotillomania.
When my parents discovered my problem, none of us knew that there was a
medical name associated with it, called Trichotillomania. My parents
did not know what to do. I went to psychologists but to no avail, and
in my opinion they made things worse. I felt these sessions were a means
of putting the blame on me and assisted in removing any form of guilt
from my parents if they had any. I was always reminded that I was a
difficult child, and that three out of their four children were
"normal", so it must be something wrong with me. I know that trying to
blame someone else is never the solution. However, understanding and
coming to terms with the real issues behind this disorder, is what
really helps. I never felt that I fitted in with my family. I always
felt different and alone inside. I have never had a very good
relationship with my parents and always longed for their unconditional
love and acceptance.

I think my hair pulling resulted from many factors, namely the
following:
I felt there was a lot of competition in the family, and that I was
treated as an "outcast" because I lacked a special quality that each of
my siblings possessed. My oldest sister was very academic. My brother
was my parents favorite, being the first born and only son. My twin
sister was very outgoing and pretty and I was like the lost sheep.
Because of this I was always afraid of failure and lacked self
confidence and had a low self esteem. I was constantly searching for my
parents acceptance and approval. I always felt there was a lot of
competition in the family, on an academic and social level, and even
though it was never expressed verbally, I always felt that my parents
insinuated things that made me feel inadequate, unsuccessful and a
failure. I was always worried and anxious about something. I found it
very hard to trust people, have difficulty in making my own decisions,
and always felt that I was neither good enough nor worthwhile.

I know that my hair pulling is both a habit as well as a form of
expressing my anxiety. I know my pulling triggers are mainly from
stress/worries, anxiety, habit and sometimes out of boredom. I don't
think my pulling was a means of attracting attention within the family.
There are times that my hand automatically goes to my hair, and when I
realize what I am doing, I don't even have the desire to stop pulling.
When I wake up in the morning, my hand automatically goes to my hair
like a signal from my brain. I find if I prevent myself from pulling my
hair first thing in the morning, my urge to pull decreases for the
remainder of the day.

When I pull, I pull out a strand at a time, and not bunches. Then I
play with the strand and bite the end off, but I do not eat the hair. I
hardly ever pull in public, and if I do I am very careful no one is
watching. I try to avoid the mirror, as more often that not I will be
tempted to pull out a particular strand. For me, the rougher and curlier
the strand is, the more tempting it becomes. I also smoke, and even
though I know it is bad for ones health, I am petrified to give it up.
Pulling is the most convenient way for me to relax and get rid of my
anxieties and stress, and unfortunately I have not yet found a more
productive way to combat this disorder. Trichotillomania has certainly
controlled my life in many ways. I dread going to the hairdresser,
dentist, swimming or having photo's taken. And often I would make a
point of getting to work early to check my hair, especially in Winter
when the wind and rain would come. I am also fortunate that my disorder
is not visible, and that I am able to style my hair to avoid any patches
from being seen.

In my native, South Africa, I worked for a bank, and in 1991, after
working there for one year I saw an article in a magazine about
Trichotillomania. This was the first time I had ever heard of the name.
>From that article I got connected with The William Slater Center. This
center deals with various disorders and problems, and after being
interviewed , I was accepted into their program. This was a three month
program, and because of this I knew I would need to inform my boss.
This was the first time I had to expose my secret to anyone. Yes, there
were many times I was questioned by my co-workers about my hair. At that
time I tried to pin up the little bit of hair I had to cover the bald
patches. This obviously brought attention to others, and I was
frequently asked as to when I would show them how my hair looked when it
was down. So, because of this, I was a bundle of nerves, and would sit
for hours planning my "talk" to my boss. However, when the day came
that I told her, she was extremely compassionate and supportive towards
me. My boss, was the first person I had ever told about my problem, and
I am eternally grateful to her for her kindness, for if it was not for
her compassion, I probably would not have ever opened up again. There
was still one more hurdle. In order for me to get approval to be absent
from work for three months, I had to also inform my boss's superior
about my reasons, which I obviously was not too thrilled in doing.
However, besides the two of them, no one else knew why I would be away
for 3 months. And to my surprise my company gave me paid leave for the
full three months while I was on this program, on condition that I phone
them at least once a week about my progress. The program certainly
helped me deal with problems I had, but unfortunately did not do much
for my problem with Trichotillomania. The main reason for this was that
I was the only one with Trichotillomania, and when I eventually had the
courage to tell everyone in the program why I was there, most of their
reactions were not very comforting and I had little peer support.

After that, I came into contact with four other people, who were also
Trichotillomania sufferers and we formed a support group, and met once a
week. In many ways this was the best treatment for me. It was a place
where we all identified with each other, shared experiences, set goals
for ourselves, and most importantly supported and accepted each other
for who we were.

The first person I ever explained my disorder to was my sister
ex-boyfriend, who was a psychologist. Perhaps that made me feel more
comfortable, thinking that he must have already heard lots of "weird"
stories from his patients.

The next person I told was an ex-boyfriend of mine. It was only after
we had been dating for about 3 years, that I told him one night.
Actually, I was always waiting for the day when he would make a comment
about my hair, but he never did. This was probably because I always
prevented him from touching my hair or going near it. His response was
once again extremely comforting to me, as I felt he was accepting me for
who was. The night I told him he was naturally surprised, and his first
response to me was "Why?". I was totally amazed that there was someone
who genuinely wanted to know why I pulled, and the reasons behind it.
This was definitely a huge change from the usual responses and weird
looks which I often received. He was very sympathetic, and very
accepting. He has been a great support system to me, and has given me
so much hope and encouragement. And to this day, every time we speak to
each other, he always asks my how my hair pulling is doing.

Once my mother asked my why I don't simply pull the hair out on my legs,
and to this day I still don't have an answer for her. It has been a
hard battle for me, and I often wonder when it will ever end. However,
I have found that listening and relaxing to music and keeping myself
busy helps a great deal. Group and behavioral therapy has also been
excellent help.

I personally think one needs a lot of self confidence, security,
discipline and support from friends and family in order to successfully
overcome this disorder. I look forward to the day when I no longer feel
the urge to pull. I know I still have a long and hard road ahead of me,
and still hope that one day I will overcome this compulsion. However if
not, I am now able to accept myself. Today I have found peace within
myself and have come to terms with my disorder. I don't blame anyone,
as I know I can only change myself. Sure I have often wished that I
never had Trichotillomania, but I believe things happen for a reason.