TRICHOTILLOMANIA LEARNING CENTER IS AN ORGANIZATION DEDICATED TO HELPING AND SUPPORTING THOSE WITH TRICHTOTILLOMANIA.
Trichotillomania (pronounced trik’oh-till’oh-may’nee-ah) is a disorder that causes people to pull out the hair from their scalp, eyelashes, eyebrows, pubic area, underarms, beard, chest, legs or other parts of the body, resulting in noticeable bald patches. For some people, trichotillomania can be mild and can be managed through extra awareness and concentration. For others, at times the urge may be so strong that it makes thinking of anything else nearly impossible.
The Trichotillomania Learning Center (www.trich.org) was founded in 1991 by Christina Pearson with the mission of ending the suffering caused by trichotillomania, as well as related body-focused repetitive behaviors such as skin picking. Pearson knew firsthand the emotional and psychological suffering that result from hair pulling and skin picking. She also knew from her own experiences that there was a desperate need for resources of information about trichotillomania. Pearson set up an 800 number for people with the disorder and, in 1990, appeared on a local Seattle television program to talk about her experiences and to encourage others with the disorder to call. After the show aired, she was flooded with hundreds of phone calls. Seeing that people needed someplace where they could get information and could meet others who had the same problem, Pearson started TLC.
Trichotillomania was named in the 1800s, but it was not officially recognized by the Diagnostic and Statistical Manual of Mental Disorders until 1989. As a result, it is only in recent years that the disorder has received the kind of attention it deserves; however, it is still not widely known among the general population, and those who suffer from it typically experience a considerable degree of shame and isolation. TLC is working to change that.
hairlosschat.com spoke with Jennifer Raikes, the executive director of TLC, about the disorder and what the organization is doing to help people deal with it. Raikes is herself a hair puller and an experienced documentary filmmaker, whose Bad Hair Life, about trichotillomania, aired on public television.
HLDC: How large is TLC? Can you tell me a little about the programs and resources that TLC offers?
Jennifer Raikes: TLC has about 1,500 members and gets about 500 new requests for information each month; our website gets approximately 20,000 visitors per month. Our in-person events probably reach about 1,000 people annually.
TLC’s annual conference involves experts from all around the world who come to make presentations to an audience of about 450 people. The annual retreat is smaller in scale, with approximately 150 people, and it’s more focused on the emotional aspects of trichotillomania and the recovery process.
We also offer local workshops around the country to make services more accessible to people who can’t travel. One of our goals is to build community. Hair pulling tends to be a disorder of isolation: people feel ashamed or strange that they engage in behaviors they seemingly should be able to control, and as a result they keep it to themselves. Sometimes they don’t even tell those closest to them. And they don’t know there’s help available or that there are others like them. So, although we make available a lot of information on how to stop hair pulling, we also devote a lot of resources to the emotional healing that people need.
Our services also include offering programs to improve treatment; starting support groups; helping people find a local provider or a local group; offering phone and e-mail support; providing educational events; and raising awareness both in the general population and among medical professionals. We fund research ourselves and also encourage others to fund research.
The disorder is not well understood, but that is slowly changing; there’s more research and more learned every year, leading to better resources and better treatment. We don’t have a cure, but we do have increasingly more effective treatments. One of the problems is that there is an extreme shortage of knowledgeable treatment providers, so even though approaches to the disorder are improving, not many providers have the experience and up-to-date knowledge.
Sense of shame is a big barrier in trichotillomania
HLDC: How do most people find TLC?
JR: The majority find us through the Internet. Because trichotillomania is a shame-based disorder, the Internet has been a real blessing. People can anonymously search and find us and get the information they need. They can even join our online support groups and start connecting with others before they’re ready to do so in person.
HLDC: What do you think people with trichotillomania are looking for when they establish contact with TLC?
JR: Most people want information on how to stop pulling their hair out, and we certainly try to provide that. But sometimes people want to dig deeper; they’re looking simply to be happy, to feel better. We try to help by letting them know that they are not alone and that they are not damaged people.
The shame that goes along with trichotillomania has a huge negative impact on a person’s quality of life and impacts almost every aspect of life choices, from dating to careers to relationships with loved ones. It can be really destructive and insidious, and it’s important that people realize it’s not their fault; they’re not weak willed or strange but instead have an actual disorder. We know now that it has a genetic component and that it’s a neurobiological disorder, and people need to realize this.
HLDC: What are some of TLC’s future goals?
JR: We really want to create a world where this disorder is better known and people can have access to information quickly and readily and have access to knowledgeable treatment locally. We are working very hard to expand awareness and to train treatment providers in best practices, and of course we want to find a cure. We will continue to steadily support and foster research.
HLDC: Do you feel that this greater societal acceptance of traditional baldness in men has a benefit to individuals with trichotillomania as well?
JR: In some cases I think this helps, but what really helps is someone coming to a greater sense of self-esteem in general and an acceptance of looking however we look. With women, there’s probably a bigger stigma, since hair loss among women is less accepted than among men and since women have to contend with different “beauty ideals” in society. But men really suffer as well.
JR: The compassionate message from hairlosschat.com conveys advice for healthy living and self-love that should be helpful to people with hair-pulling disorder — and truly for all people. Good diet, exercise, relaxation and social support are deeply important to our health and well-being. Another act of self-care for anyone suffering with trichotillomania is to learn as much as possible about trichotillomania and the effective treatments available. Because the general public and even most medical professionals don’t know much about hair-pulling disorder yet, it is vital that we educate ourselves about it so we can make the best choices to achieve recovery.
Still much to learn about trichotillomania
HLDC: Do doctors at this point know why trichotillomania is chronic in some individuals but not in others?
JR: No, and we can’t predict the course of the disorder in any individual. We can’t tell whether there is a likelihood that it will be chronic or fleeting, or how severe it will be. This is why we want people to be as educated as they can about the disorder, so that whatever course it takes, people will be prepared. We do believe getting treatment at a young age is very beneficial and may alter the course of the disorder. It’s likely that people who have trichotillomania today may have different outcomes than those who had it in the past, both because the treatments are more effective and because people with the disorder are getting started earlier.
HLDC: In terms of medical treatments, are there any medicines that have been approved by the FDA for use in treating trichotillomania?
JR: No. The only medical treatments involve off-label use of drugs that are approved for other disorders. Their effectiveness is very mixed and depends a lot on the individual; often they help with coexisting problems such as depression or anxiety more than with the actual hair pulling itself.
HLDC: Where are we in terms of medical research?
JR: We are still in the early stages of research into trichotillomania. The pace has been increasing in recent years, over the last decade or so, but we still have many more questions than answers. That said, techniques have improved significantly. Behavior therapy is the frontline treatment, and the mode of behavior therapy has become more refined and improved. If a person tried behavior therapy for trichotillomania a decade ago and then tried it again today, there would be a huge difference. In addition, there have been some promising developments involving an amino acid called N-acetylcysteine (NAC). In a small study by Jon Grant, NAC helped reduce the urge to pull in about 56 percent of adults with trichotillomania. TLC is now funding a small study of NAC in children.
Also in the past few years we have seen the very first federally funded large-scale research studies involving trichotillomania, which is a major advance.
HLDC: What else would you like to tell us?
JR: TLC is here, and we really strive to put out trustworthy information. Our scientific advisory board vets the information we put out, so we are a very reliable resource. We encourage anybody with trichotillomania or a loved one with trichotillomania to contact us — by e-mail, by phone. We really are here to help.