... An adolescent girl buys a pair of unneeded reading glasses and puts them on every time she leaves her house. She's willing to go through life unable to see, as long as others can't see what she's hiding.

 ... A little boy goes to the back of his class for the pledge of allegiance because he doesn't want to remove his cap in front of his schoolmates. But the taunting begins anyway, and at the age of six he's already decided it's better to resist the temptation to make friends than to risk the humiliation that will come from discovery.

 ... A thirty-year-old woman allows her neighbors to think she's undergoing chemotherapy for cancer. But it's been three years now and she doesn't know how to explain the fact that she's still bald--and still alive. She wonders if she should move again; she can't even consider revealing the awful truth. Perhaps her neighbors will think she finally died. Sometimes she wishes she would.

What these people have in common is an enormous sense of shame and guilt because they can't stop pulling out their hair. The disorder is called trichotillomania, a name coined by a French dermatologist in 1889 from the Greek words "thrix" meaning "hair," "tillein" meaning "to pull" and "mania" meaning "insanity" or "madness." The literal definition of a trichotillomaniac, then, would be a lunatic who pulls out his or her hair in a mad frenzy--and already the shame begins.

Categorized as an impulse control disorder, trichotillomania is currently estimated to affect two percent of the population, or one person in fifty, though for certain subgroups, such as female college students, that percentage may be double. It's been noted in every age group from toddlers to the elderly, with the onset of symptoms usually occurring between the ages of 11 and 13 (puberty) or 5 and 8 (start of elementary school). Statistics also show that while gender distribution is about equal for children, in the adult group far more women than men seem to be affected. Some studies suggest these numbers could be wrong, citing that women become part of the statistics because they are more likely to seek help due to the cosmetic consequences of their disorder, while men, for whom hair loss is not uncommon, may never seek help at all. But no one can be certain of any statistic when it comes to trichotillomania since so many sufferers, if they are even aware that they have a known disorder, lie because of their shame.

Hair-pulling by itself isn't enough to constitute trichotillomania, though, and the American Psychiatric Association lists the following symptoms or diagnostic criteria for this disorder:

• recurrent hair-pulling which results in noticeable hair loss;
• the hair loss can't be attributed to any other medical problem;
• results in substantial distress and/or impaired functioning for the sufferer;
• an increasing sense of tension is experienced immediately before pulling;
• the act of pulling results in feelings of relief, pleasure or gratification.

Of course, not everyone fits into these strict criteria. Some sufferers do not experience a sense of tension before pulling the hair, and some do not feel relief or gratification afterwards. But if you have been pulling out your hair, whether it's the hair from your scalp, eyelashes, eyebrows, beard, armpit, chest, or pubic area, and you are wondering if you might have this disorder, it's easy enough to find out. All you have to do is make the decision to stop pulling. If you are suffering from trichotillomania, your decision won't make any difference; you won't be able to stop.

As is often the case, my problem with the disorder began during puberty. It started with the innocent remark by a friend who confided that she had been pulling out her lashes and that she liked doing it. I tried it, too, and while I can't say I actually liked it, the act of pulling did seem to give me some type of satisfaction. But though my friend seemed to quit the habit, I found that I couldn't, and by the time I entered 9th grade I had almost no eyelashes left.

One morning in homeroom, a classmate loudly announced that it was weird that I had hardly any eyelashes. The other kids began to snicker and laugh, even those whom I had counted among my friends. Horrified, I sat in abject humiliation, staring at my desktop through tear-filled eyes, wishing more than anything that I could just disappear.

I remember spending hours in front of the mirror after that, trying to hide the evidence of my guilty act. My weekly allowance went to eyeliners and false eyelashes, but I wasn't adept at using them. I realize now that my inadequate attempts at camouflage probably only increased the attention of others, but at the time I was desperate to try anything. (Click here for information on buying natural-looking eyelashes and glue or to learn how to apply them.)

So there I was. In the 7th and 8th grades I had been elected class president and sports carnival princess. I was a straight-A student, a cheerleader, and a member of the girls athletic association, the choir and several other groups. In 9th grade I was a member of nothing, I had withdrawn from my family and friends, and during periods of deep depression, the thought of suicide was often on my mind.

This is the real tragedy of trichotillomania. Living with the guilt and shame of the disorder robs us of our self-respect, which in turn robs us of our lives. It isn't enough that we have to live with the obvious aspects of the disorder such as the cosmetic consequences, the time spent trying to hide the hair loss, and the time spent pulling out the hair which can be anywhere from a few minutes to more than eight hours a day. We must also live with the daily fear of discovery, and the shame and guilt we feel for our inability to stop.

We try everything we can think of, from donning gloves to handcuffs, to prevent our ability to pull. We may even be one of the tragic people who, according to THE ENCYCLOPEDIA OF PSYCHOLOGICAL DISORDERS, resorts to cutting off his fingertips to keep a hand from plucking the hair. But these frantic efforts don't help.

We begin to lead restricted lives, unwilling to participate in social events. Activities such as dancing, swimming, sporting events and even a day at a theme park are often out of the question when hiding behind makeup, wigs, hats, false eyelashes and other means of disguise. We may not go to the dentist or seek medical help for other problems for fear that a doctor might notice our condition.

Relationships become something to fear instead of enjoy, and consequently, many of us never marry or have children. In fact, for some of us, the pressures of dating aren't worth it; we would rather just be left alone. And we are left alone. Unfortunately, the act of pulling is usually carried out in solitude, so our self-imposed seclusion in an attempt to avoid discovery only creates a worsening situation, and we spiral downward from there.

I was thirty-five years old before I realized that I wasn't the only person in the world with this problem, and I wept with relief at my discovery. But, there wasn't much information available then. Once I finally learned the name of the disorder, I found only a few links on the Internet, and none of the information helped me to understand why I couldn't stop pulling. Although a study said that the brain chemical serotonin was implicated, I still felt that my inability to control what I had always considered a terrible habit was simply a failure of my character, a lack of self-discipline.

But time has passed and there's more information available now, thanks to so many of the people who are suffering with trichotillomania, people who, like me, have come to realize that the worst part of the disorder is the guilt and the shame, and that the only weapon against that is shared knowledge.

Classification

From this newly-available information I've learned that some psychiatrists feel trichotillomania is misclassified in the Impulse Control Disorder category, a category that includes disorders such as pyromania, kleptomania and uncontrollable gambling. Instead, they feel that it should be classified as part of the Obsessive Compulsive Disorder (OCD) spectrum along with eating disorders, body dysmorphic disorder and Tourette syndrome. True, trichotillomania has both obsessive and compulsive aspects. For example, specific hairs may be chosen for pulling based on the qualities of those hairs, and often the person feels he absolutely must pull those hairs and can't think of anything else until he does. Furthermore, some people must pull equally from both sides of the head, and while some may pull without realizing it, others stand in front of the mirror for hours on end pulling specific hairs with tweezers. But, according to these articles, there are also distinct differences between trichotillomania and OCD, and that muddies the water.

I don't have a clue as to what the proper classification for Trichotillomania should be; however, after reading OUT OF CONTROL: GAMBLING AND OTHER IMPULSE-CONTROL DISORDERS by Linda Bayer from THE ENCYCLOPEDIA OF PSYCHOLOGICAL DISORDERS, wherein it's explained that the characteristics of people with impulse control disorders include self-centeredness, manipulation of others in order to gratify themselves, and a false sense of entitlement or an insistence that they are different from or superior to others and therefore deserving of special treatment, I'd have to agree with the group that places us within the OCD spectrum of disorders. Chronic hair-pullers harm only themselves, and if anything, our lack of self-esteem causes us to feel as though we deserve nothing--certainly not special treatment.

But, whichever way psychiatrists may categorize the disorder, the most illuminating piece of information I found was the fact that functional MRI scans have shown structural differences in the brains of people with trichotillomania, just as structural differences have been found in the brains of people with other disorders such as OCD. That piece of information alone has brought a sense of peace to me. I no longer blame myself for this unwanted trait. It is simply a part of who I am.

And with that in mind I'd like to say the following, beginning with the words of my mother:

"Life is a test, and no one gets off scot-free."

So often we see surveys where people suffering from some particular emotional disorder are compared to "normal" people. That always makes me smile because I have to wonder which normal people the survey is referring to.

I suspect that most of the people we meet on the street look normal, but if at least one in fifty is suffering from trichotillomania, how many are suffering from bulimia, anorexia, alcoholism or drug addiction? What about the so-called normal people who are hiding bipolarism, compulsive eating or low self-esteem? Would you be able to tell if you met a victim of child abuse on the street or someone who was just told that he has AIDS or that diabetes has destroyed the arteries to his heart? And if most of these people are keeping their emotional suffering to themselves as we so often do, how can a survey tell who is normal?

What if we all wore signs that revealed our obstacles in life? My sign would read, "Hello, my name is Stephie and I am a Trichotillomaniac." Someone else's sign might reveal that he is an alcoholic, another might show that the person is anorexic. We would all know each other's problems and what each of us is dealing with on a daily basis. We could stand around then, and commiserate with each other. "So God gave you a drinking problem. Big deal--I should be so lucky. Try drinking with a bunch of your friends when you've pulled out all your hair. See how much fun that is." There would be compassion and humor and there would be no shame. We would all just be people trying to live our lives.

But, alas, no one wants to wear a sign, and I fear that even if everyone else did, trichotillomaniacs would not because we are absolutely certain that what we do is more shameful than anything that others may be doing. And why shouldn't we feel that way? I don't see any celebrities owning up to this disorder, and if one in fifty people have it, then there are plenty of celebrities out there who are dealing with it. They are willing or sometimes even eager to discuss their battle with alcoholism or drug abuse, anorexia or bulemia, but we'll never hear a word from them about this. Trichotillomania is icky, and no one wants to admit to doing it.

I can't blame them. I don't want to admit to it either, and I didn't for most of my life. When I did admit to it, I pretended that I had no idea how it was happening, as though some alien was taking over my body during the night and forcing me to pull out my eyelashes. Better that than to admit the truth. In fact, as I am writing this, knowing that I am going to post it on my web site, I wonder what the repercussions might be. Yes, my family knows of the disorder, and so do a few of my friends, but almost no one else does. What if my boss decides to visit my web page? Will seeds of doubt as to my character or emotional stability be planted? Will he have less respect for me as a human being?

I don't know and I've finally decided that it doesn't matter. I'm a writer of personal essays, and to me that means divulging personal information in the hopes that someone else can benefit from my words, whether that benefit be laughter, hope, determination or commiseration. Unfortunately, with this subject, the latter emotion comes mostly into play. True, one can find humor in the subject, as in the case where I read about a teenage girl who was hiding her lack of eyelashes with a false set, went riding with her boyfriend on his motorcycle, and then spent the rest of the day with his family, only to find upon looking in the mirror that evening that her false eyelashes were pointing straight up (from the wind during the ride), giving her a startling--and startled-looking--expression. There's also the young woman who handcuffed herself to her husband during the night with her son's toy handcuffs and threw the key across the room so that she couldn't get to it in a moment of weakness, then overslept and awakened to a confused (and quite captive) husband--and was unable to find the key. But though I smiled as I read these stories, recognizing the humor in the situations, I cried, too.

And as far as hope goes, there isn't much to be had when it comes to trichotillomania. Some things work for some people, but most of the time when a person is able to stop pulling, he or she is not even sure why. And some of the recognized treatments can actually make the problem worse, as in my case with selective serotonin reuptake inhibitors (SSRI's) such as Prozac, Paxil, and Zoloft, which are considered a treatment for this disorder. I had been pull-free for five years when I was put on Paxil for social anxiety, and within thirty days my pulling started back up with a vengeance. I find it ironic that a drug that should have given me a fuller social life actually ruined what little social life I had.

But such are the ironies of life, and these are the ironies we all live with daily. So, I've decided that fantasizing about the day that I can jump out of the shower, throw my clothes on, and walk out the door--without spending 10 minutes putting on false eyelashes, or the day that I can go to the beach and swim as I was once able to, i.e., diving head-first into the waves--gets me nowhere. Just as I've finally decided that expecting myself to ever have reed-thin thighs or an outgoing, extroverted personality is hopeless. As the saying goes, it ain't gonna happen.

So, instead, I've decided that this is the only life I've got, and I have to learn to live it to the fullest, filling it with love, and vigor, and anticipation and wonder, despite this "burden" I bear. No one can change the quality of my life except me, and to do that, I simply must build a world for myself where these things don't matter--where people form their opinions of me from the way I treat them and others; where people aren't afraid to reach out for fear of rejection because of the way they look or because they have a disease or hardship they are living with daily; where everyone realizes that there isn't a problem in the world that one person can have that someone else hasn't had or doesn't have right now.

I happen to think that in addition to the burden each of us bears, we also have a gift, even if it is simply the gift of tolerance, of friendship, or of a kindness that allows others to find comfort in our presence. It can take us much longer to realize our gift, and sometimes, much to our dismay, the gift and the burden can even be the same. But how we react to our gifts and/or burdens and how we live our lives as a result is unique to each of us, and each of us is completely responsible for his or her own life. If we decide to let our burdens dictate the paths of our lives, that's a decision we must realize we made consciously, knowing that we had other choices and decided to forgo them.

To that end, I say take a long look at your "burden" and decide if you're willing to let it determine the path of your life, the people you don't meet, the places you don't go. Look at those you love and decide if you want to deprive them of the gift that is YOU, simply because of the way you perceive your burden. And if you're suffering from trichotillomania, tell yourself every day that it's only one small part of who you are, yet without that part, you wouldn't be you. And then realize that there are many things you can do to change the quality of your life:

1. You can accept yourself for who you are and stop living a lie. During the past year, I've done some soul-searching and I've come to realize that I don't want to continue living my life on the sidelines. I'm no longer willing to lose precious moments with my sister while I hide behind a locked door, pretending I'm not home because I haven't put on my eyelashes. I don't want to turn my back on the chance to find a loving partner because I'm ashamed to admit to my embarrassing secret. This is who I am, and accepting that doesn't mean I can't work to change it. It simply means that I don't have to be ashamed anymore.
2. Dr. Nathaniel Branden writes in his book, HOW TO RAISE YOUR SELF-ESTEEM, "The lies most devastating to our self-esteem are not so much the lies we tell as the lies we live. We live a lie when we misrepresent the reality of our experience or the truth of our being." This doesn't mean that we can't wear false eyelashes or wigs if we feel more attractive with them, but rather that we need to admit to the truth of who we are. We tell ourselves we don't want people to know about our problem because they might reject us, but when we hide the truth of our existence we have, in essence, already rejected ourselves. We've passed judgment and found ourselves guilty, unacceptable as human beings and undeserving of honest and loving relationships.
   
   I can't begin to explain the burden that was lifted from my heart when I admitted to my family and close friends that I suffer with this disorder. To my surprise there was no ridicule, pity or embarrassment on the part of those I confided in, but rather compassion for my trials, and an intimacy that results when people feel you've placed your trust in them. In turn, some of my confidants have shared their problems with me, and a deep and abiding sense of comradeship in this game of life has resulted where none existed before. If there were any one thing I could urge you to do, it would be that you stop living the lie--at least with those you love.
3. You can learn to trust. Yes, it's hard to trust others, especially when you can't trust yourself with your own feelings. And maybe you will be hurt. But as Dr. Joni E. Johnston writes in her book, APPEARANCE OBSESSION: LEARNING TO LOVE THE WAY YOU LOOK, a person's response to your self-disclosure reveals information about him or her--not about you. If you decide to confide in people about your problem and they turn their backs on you, you're better off without them. The people that love you for who you are and not for the way you look will be there, standing strong and proud beside you, cheering you on every step of the way.
4. You can educate yourself and others. When you think you are alone in your disgrace, the shame eats you alive, and that is exactly the way many children with this disorder feel. They have no way of knowing they are not alone unless they hear it or read it. Let's educate them so that they know they are not responsible for what's happening to them, and let's educate their friends and families so that they can recognize the disorder and can better understand.
5. You can seek help from others even as you help yourself. Start with an awareness of what you are doing and when. For many of us, fear and/or anxiety precipitate pulling. What are you afraid of and what can you do instead of pulling to alleviate that fear?
• Try cognitive behavioral therapy with a sympathetic therapist. Of all the treatments for trichotillomania, this seems to be the one that actually works. It can help you to discover your emotional needs and the triggers that start the pulling. Then you will learn to increase your ability to tolerate those triggers while substituting other behaviors in place of the pulling.
• Cognitive behavioral therapy is especially vital for children because it's been proven that early treatment of the pulling behavior, before it becomes a habit, offers the best hope for recovery. (See http://www.nacbt.org/whatiscbt.htm or http://www.cognitivetherapy.com/basics.html for more info on cognitive and/or behavioral therapy. It is a short-term (~16 visits), very effective method for changing your life.)
• If you can't find a therapist in your area, try reading THE HAIR PULLING HABIT AND YOU: HOW TO SOLVE THE TRICHOTILLOMANIA PUZZLE by Ruth G. Golomb and Sherrie M. Vavrichek. It is written for teens but everyone can benefit from it. Check out other books from the library on behavioral therapy.
• Eat a balanced diet, take a multi-vitamin daily, and exercise regularly. Physical health promotes mental health, and exercise not only relieves stress but also increases self-confidence and a sense of well-being, things that most of us sorely lack.
• Read END YOUR ADDICTION NOW by Dr. Charles Gant and Dr. Greg Lewis. The book is about brain chemistry and amino acids and other supplements that the authors feel, based on Dr. Gant's experience as director of an addiction clinic, help to change chemical imbalances.
• Try the John Kender (J.K.) Diet which can be found at many trichotillomania sites. It limits certain foods and includes potassium supplements. Many people feel it has helped them to become pull-free.
• Talk to a psychiatrist about medications. While selective serotonin re-uptake inhibitors such as Prozac and tricyclic antidepressants such as Clomipramine have so far shown only limited success in reducing the desire to pull, they may help with the depression that many of us experience from living with the disorder, and there are other antidepressants that may work for you. Also, some success from pulling has been reported with inositol, a type of B vitamin that helps to regulate serotonin within the brain cells.
• Hypnosis, guided mediatation, acupuncture--nothing can be ruled out. Try it once or twice or not at all--it's totally up to you. As time passes, there may be other, better discoveries so keep abreast of research.
• Expand your social life. Remember that most pulling occurs when we are alone. Don't sit at home by yourself if that's when you are most likely to pull.
6. You can change your attitude. Reverend Charles R. Swindoll said, "I am convinced that life is ten percent what happens to me and ninety percent how I react to it. And so it is with you... we are in charge of our attitudes."