Mary in WI's story

First of all, I want to let you know that although I grew my hair back in 1996, I'm not pull free. I was for several months, but eventually I slipped back into the old behaviors again. The good news is that my pulling isn't anywhere near as bad as it was prior to my seeking treatment in 1995. On average I pull about 3 to 6 hairs a day, and that I can live with. I don't think I could ever go back to the way it was when I was completely bald on top. At least I hope and pray not. Christina of TLC tells me it would be impossible for me to go back to where I was because I've grown so much and am at a different place now. My self esteem has grown by leaps and bounds, if you'll pardon the cliché, and I'm a stronger person because of trich.

The other thing I want to say right off the bat is that when I first sought recovery/treatment, I thought having a full head of hair again was IT - the whole reason, the goal, the ultimate, etc. But after a while I began to realize what so many others tried to tell me - in essence, that hair is the icing on the cake. (And some people never manage to grow all their hair back.) The cake itself (or the substance) is the transformation that occurs inside you when you finally "get it." By that I mean the realization that this is a chronic condition that will not go away, that we are worthy people in spite of it, and that we are normal people who do not have to allow trich to consume our entire lives. There's more to it than that, and it's different for everyone, but that's the gist of it, in my opinion.

At my first retreat the things that struck me most were the facts that 1) it is possible to grow hair again after having supposedly damaged the follicles beyond repair; and 2) the pullers I met were and are so NORMAL...I had the self-image of a freak, and I went to the retreat assuming I'd meet a bunch of other freaks like myself. Was I wrong! These people were beautiful (in most cases I couldn't tell they had trich at all), had normal lives with boyfriends, husbands, children, good jobs, college educations, etc. I was bowled over, too, by the loving atmosphere of the retreat. I didn't take my wig off that first year except in front of my cabinmates at bedtime, and only because one of them took hers off, and her head looked worse than mine did. The strength and courage displayed by those first trichsters I met is with me still today as an inspiration.

Anyway, once I found a therapist in my town who was familiar with trich (believe me, that's difficult, especially in small towns) we began to experiment with different treatment methods. Among the ones that didn't work so well (or not at all) were behavior modification; logging my pulling with details of when, where, how many, how I felt at the time, etc.; a relaxation tape; covering my head with a wig liner at bedtime (which was one of my worst pulling times); and meds. None of the meds they tried did a thing for my trich: Prozac, Luvox, Serzone, Celexa, Anafranil, Buspar. With one or two of them I did see a slight improvement in my mood (e.g. I didn't cry as easily as I normally do).

What I truly think worked for me, at least initially, was the combination of a therapist who knew how to talk to me plus my own sheer determination to get the better of this trich monster. Of course, I have a disdain for taking meds unless absolutely necessary, so that mindset probably had a lot to do with it. My therapist and I were a good fit because she was in essence my cheerleader. She would constantly point out the good things, the positive things in my life. She'd constantly tell me that she admired me for what I was accomplishing in my life despite this disorder and how much strength and courage I have, etc. And she said that of all her patients (trichsters and non-trichsters alike) I was one of the few who exhibited a true desire and ambition to get better. This was especially helpful because I've always been one of those "the glass is half empty" kinds of people, always negative. Whenever she'd hear me starting to say something negative, she would immediately stop me and force me to turn it into a positive statement. She never tired of doing this, as I was a slow learner at first. After a little practice it became an automatic thing. To this day I still use positive self-talk each and every day just to function in the everyday world. I have to keep reminding myself that I am a good person, a worthy person. It's getting easier because now I do see what my therapist saw all along. A strong (well, most of the time) determined woman. She calls me "driven."

I just got sick and tired of hiding, lying and making excuses, the things we trichsters know so well. I wanted my life back! I think basically I just got mad enough at the trich and what I felt it robbed me of all those years (27 at the time). There was a strong, smart, funny, talented, valuable person inside me bursting to get out. Funny, but it took the actual "ceremony" of throwing the wigs away (hopefully for good) for me to finally feel I could face the world wigless with confidence. Since then I have become more and more involved with TLC in an effort to give back to the organization that was responsible, at least initially, for my recovery. We would probably all still be pretty much in the dark if not for Christina and her wonderful efforts.

As I alluded to before, I do still pull, but my pulling is at a level I am satisfied with, at least for now. Part of "getting it," too, is accepting the fact that we may never be able to stop pulling completely. The main thing that I feel people should put their effort toward (besides their own personal recovery, of course) is getting the word out, educating people one by one. This goes a long way toward squashing the shame and isolation that accompany this disorder. In my own experience, when I started telling people, or "coming out of the closet," if you will, in almost every instance the person I told about the disorder said, "Gee, I know someone who does that!" This disorder is so very much more common than people think, and we could be sitting next to another trichster in a movie theater, airplane or city bus without even being aware of it. What we need, I think, is for a celebrity to come forward and admit to trich. If the Dateline NBC segment could fill our 1999 retreat, just imagine what one celebrity coming out to the media could do!

I hope I explained myself sufficiently and didn't bore you with too much information...

Be well,
Mary in WI