Trichotillomania: Out of the Closet
Trichotillomania: Out of the Closet
Only eight weeks after beginning treatment for trichotillomania (hair pulling) at Stanford University Medical Center, Christina Pearson found herself being invited to appear on a local television show in Seattle to discuss the disorder.
I run a voice mail company, so I took a hotline number with me which I gave out on the show. By the time I got home that evening, I had hundreds of calls...and about 600 by the end of one week. I was stunned, she said. People were desperate for help. They talked about going to doctors and hospitals and of having been basically rebuffed, not negatively, but because the clinicians didn't know what to do with them. There was no treatment modality, and there were no treatment providers either. Trichotillomania then was considered a rare condition. It became evident that there was a terrible, terrible need for some type of resource to begin the process of raising public awareness, creating treatment options and providing valuable referral sources.
From her own pain, Pearson felt a strong commitment to do something.
The absolute suffering and the desire to die rather than expose myself is what drove me to try to make a difference. It was the absolute agony that I experienced as a teenager and through my entire 20s. I was tying my hands together, taping my mouth shut, wearing ski masks to bed-terrified that someone would discover I was defective. I was pulling my hair out, eating it, and not understanding that if I was so smart, why couldn't I stop. I lost all of my higher education to trichotillomania. I dropped out of eighth grade. I closed the door to intimate relationships. I was spending six to eight hours per day pulling my hair and trying to run a small business.
It was an article by Susan Swedo, M.D., and others from the child psychiatry branch at the National Institute of Mental Health (NIMH), that helped Pearson first identify her illness. I found out that there was a name for compulsive hair pulling due to an article on the double-blind comparison of clomipramine [Anafranil] and desipramine [Norpramin] in the treatment of trichotillomania published in the New England Journal of Medicine [1989:321(8):497-501]. I then went from there to look for resources that would work. According to Pearson, Judith Rapoport, M.D., Swedo and others at NIMH had started studying obsessive-compulsive disorder (OCD) primarily in children, and when they issued calls for people to participate in studies, they got responses from many hair pullers asking for help.
They became aware that there must be a higher number of hair pullers than had been previously thought, and that was when it began to get attention, Pearson said, adding that 6 million to 9 million people in the United States are said to have trichotillomania.
In the spring of 1990, Pearson and others started a support group for hair pullers in Santa Cruz, Calif., which still operates today. By the fall, Pearson persuaded her landlord to let the group rent an office to serve as an information center for hair pullers.
I told my landlord that I had a really powerful calling to provide this service, but I had no money yet. He trusted me to rent the office space, which we still have today. Basically, we didn't pay rent for the first year and a half. We just kept track of what we owed, and I told him we would pay him back. We paid him back, and we are current every month, she recalled. Pearson also sold a portion of her voice mail company and lived off the proceeds, so she could start the Trichotillomania Learning Center (TLC). For the first three years of the organization's operation she drew no salary. In 1991, TLC was incorporated as a California nonprofit association. Its threefold mission is to raise public awareness, create and maintain a flexible support network, and raise funds for research. With raised awareness and with a flexible support network, when answers come there is a way to get them to the individual who still suffers, Pearson said.
In the beginning, TLC policy was set by a small board of directors that came out of the first support group. Gradually, the board has evolved into a national board with representatives from across the country. All but one has trichotillomania.
Building a viable nonprofit group took immense dedication, and Pearson credits the Obsessive-Compulsive Foundation for providing much-needed help: They were an absolute guiding light in giving us directions and information on how to go about providing national services; we didn't have any external funding. It was a marvelous alliance and still is to this day. The OCD Foundation continually refers clinicians and hair pullers to us. We serve as the information resource on trichotillomania.
In the spring of 1991, TLC launched a newsletter, In Touch, as a way to generate income, raise awareness and promote an interaction between health professionals and those who have trichotillomania. The first subscribers were mostly doctors and practitioners who were currently treating patients with OCD, but who wanted information on trichotillomania. In time, TLC established a membership program, and began to get national publicity. The group was featured on two segments of The Dr. Dean Edell Show and began to get inquiries from across the country. A letter on trichotillomania published in Ann Landers' syndicated column resulted in some 12,000 requests to TLC for information on the subject.
So far, we have given assistance to about 20,000 hair pullers. Our membership is about 2,000, Pearson said. TLC sponsors three support groups in California and has been instrumental in the formation of some 30 others across the country. Its information line is manned by both volunteers and two part-time employees.
We are averaging from 30 to 100 new contacts per week, Pearson said. Each new contact can take an hour, because people are so desperate for connection. They need to hear someone say 'I know what that's like, I've been there'; 'I do that too and guess what, today I have hair'; or 'Today I feel good' or 'Today, I have a life.' As we all know, the hair comes and goes, but who we are and what we are doing, that's where the value is. Today, we don't base trichotillomania recovery on whether you have a full head of hair-we base it on whether your life is fulfilling, wholesome, healthy, and if you allow your potential to come forth.
So many people with trichotillomania lead restricted lives. We see people who have pulled their hair for 50, 60 years, who never had children, never had a relationship, because they felt defective, they felt unacceptable, they felt deformed. We see people who won't leave their houses without spending hours trying to use makeup to disguise the hair loss on the eyebrows. It is thought that about one-third of people who acquire wigs in this country may suffer from trichotillomania. We see people who won't go swimming, won't go dancing, won't let somebody touch them. The sad thing is these are primarily high functioning, very intelligent human beings who are restricted from fulfilling their full capacity as members of society because of their fear of exposure. It's a terrible tragedy.
Voice of Its Own
Because trichotillomania is a fairly new, out-of-the closet disorder, Pearson said, it is still developing a voice of its own. We are learning what procedures, formats and protocols work best for dealing with this particular kind of impulsivity. Sometimes, people liken it to addiction, but in my opinion, it is much more primal, coming from a preconscious, subconscious place. It is much more kinesthetic; not a lot of rationality is involved. Early on, TLC established an alliance with psychiatrists, psychologists and other helping professionals.
In 1993, I called upon leaders I was familiar with in the medical community, clinicians and researchers, who were interested in the obsessive-compulsive spectrum disorders, primarily trichotrillomania: Gary Christenson, M.D., at the University of Minnesota; Richard O'Sullivan, M.D., at Harvard Medical School; Carol Novak, M.D., at Pioneer Clinic in St. Paul, Minn.; Charles Mansueto, Ph.D., of the Behavior Therapy Associates in Silver Spring, Md.; and many others.
I asked them if they would be willing to participate as an advisory consultant board on behalf of this new, fledgling organization, and they were wonderful and have been wonderful to this day, she said. We received funding from Solvay Pharmaceuticals to facilitate bringing these people together, which had and has had a profound effect on the treatment of trichotillomania.
The collaboration of the researchers and clinicians has resulted in a soon-to-be published textbook on trichotillomania being published by American Psychiatric Press, edited by Daniel Stein, M.D., a member of TLC's advisory board, and Eric Hollander, M.D., from Mt. Sinai Medical Center. The information interchange has also resulted in the development of new diagnostic rating scales and the changing of some of the wording about trichotillomania in the revision of the DSM-IV.
Currently, the Scientific Advisory Board is working on developing treatment protocols and establishing a program similar to that of the Obsessive-Compulsive Foundation, which has instituted a Behavior Therapy Institute that trains clinicians. The first TLC-sponsored medical conference on trichotillomania was conducted earlier this month in Philadelphia. Phillip Ninan, M.D., from Emory University School of Medicine in Atlanta, is asking physicians across the country who are treating their patients pharmacologically to follow certain protocols, so that even without the funding for a multicenter study in a year or two, we can have some valuable information from which to create treatment algorithms, Pearson said. These are professionals who receive not a penny for this work. They are working to help us, because they see the impact of trichotillomania on their clients' lives. When TLC sponsored its first retreat in 1992 (PT October 1992), three members of the Scientific Advisory Committee attended: O'Sullivan, Novak and Mansueto.
The doctors came and sat around the bonfire and ate lunch in the dining hall with everyone. It was a transforming experience for them and for others. Our sixth annual retreat was held in August with 150 people coming from 33 states and Canada, Pearson said. The impact of the retreat is that it provides people who have suffered from an isolating disease the opportunity to step outside the need to hide, and the opportunity to be among people who were knowledgeable about trichotillomania.
Finding funding for TLC has not been an easy task, according to Pearson. She said TLC has approached about 50 foundations, but has received little external funding.
She believes that is due, in part, to a lack of knowledge about trichotillomania's impact on a person's life.
Our annual budget is about $110,000 and that is almost completely internally generated by our membership. We do get donations. We had one school in Canada send us $150 collected on a jeans and hat day [teachers pay $1 for wearing jeans and students $1 for wearing hats] because one of their students has trichotillomania. A Boeing employee who has trichotillomania put us in their Good Neighbor Award, and so we get $600 or $700 per year in contributions from Boeing. These moneys come because those with trichotillomania reached out to their environment to ask for help for this organization, she said. We also had a fund-raising drive to our membership asking for assistance, and we did receive $10,000.
TLC has also established a research fund and has asked its membership and others for help.
There are several developments in research, Pearson said. Richard O'Sullivan at Harvard, and associates have done some functional magnetic resonance imaging scans [fMRI] with 10 controls and 10 women with trichotillomania and have found some structural differences in the putamen and globus pallidus. This is the first hard science that shows a structural difference in trichotillomania. That's a wonderful stepping-stone to the next level, showing that trichotillomania is not just a habit, but a complex disorder manifesting in a myriad of ways.
While the functional MRI is probably the largest breakthrough, we also know that serotonin plays a role in the disorder just as it does in OCD. The problem with medication is that the effect of selective serotonin reuptake inhibitors (SSRIs) on trichotillomania seems to wear off over time, yet it doesn't seem to do that with classic OCD...Brain scans show trichotillomania to be probably closer to Tourette's disorder than to OCD, although it overlaps both. I believe it has enough power and impact to stand on its own.
Regarding treatment, Pearson said a multimodal approach is best.
It can include medication, and definitely behavior therapy. It also requires a personal/spiritual commitment to development of self-awareness. With a good treatment provider who is aware of these modalities, a person can go far. Hypnosis is helpful for some, as is changing diet, reducing stressors, and using habit reversal techniques. Most of us who have pulled for years and years find there is a mixture of different patterns of techniques that work at different times, Pearson said. One of the things about having trichotillomania is that one needs to be flexible and open-minded, because what worked yesterday may not work today.
An open mind is also an important quality in the helping professional, Pearson said.
Any treatment providers who work with trichotillomania need to be open-minded and to understand how difficult it is to work with a condition where you might not see a lot of improvement. That can be very hard on somebody who is devoted to helping others. I urge you to stay upbeat, because we are discovering new pathways.
Pearson is particularly gratified by the work TLC has done with children, teenagers and their families.
"Today, trichotillomania can be controlled and managed, and it doesn't have to stop you from being fully happy with yourself. If anything, we have 16-year-olds who say, 'I am stronger because of this, I am a better person, because I've learned so much about what to do with myself, how to treat myself and where my limits are.'
And what about Pearson's recovery? She's happily married and has a full head of hair.
I still do find myself pulling during periods of great duress; also the premenstrual time is a trigger time for me, so I know to be very careful-to go to bed early, take lots of calcium, exercise. I have been on SSRIs for seven years. They help with my depression, which helps keep me motivated to stay aware, but they are not a primary intervention with my hair pulling anymore, although in the early days, they were. My hair pulling has been reduced by 97%. Is it perfect? No. Can I live like this the rest of my life? You bet. Am I grateful? Forever. The Trichotillomania Learning Center is located at 1215 Mission St., Suite 2, Santa Cruz, CA 95060, (408)457-1004. The author of this article is a member of TLC and attended the first retreat in 1992.