So my story starts way back in 1994, well 1995 really but some incident/situation in 1994 might have contributed to my acquiring AU. In case you don’t know, AU stands for Alopecia Universalis. It is the most severe and rarest of the main forms of Alopecia.

So my hair loss started in January 1995, and my long (about mid-back) brown locks departed rather quickly and efficiently. It went in a diffuse, even pattern. At one stage, when maybe 80-90% was gone, I looked a lot like the Cryptkeeper from Tales from the Crypt. If you've never seen the show, – or the opening to it – you could YouTube it or just take my word for it: the hair was very sparse and long and…just very SPARSE.

An asshole dermatologist actually bald-face lied to me and my mom and told us he could reverse the condition, A nurse actually pulled my mom aside when the doter wasn’t around and told her that I would quite probably lose it all. The doc also had me not wash my hair for the last week or so I had any. So it wouldn’t fall out as much. So the last 7 or so days I had hair at all, it was oily and just yuk. I really cannot stand that doctor. And he actually used the term “I’m not strokin’ ya.” When in fact he WAS stroking me and I was very much disturbed by the doc bringing up ‘stroking’ at all.

I was subjected to cortisone shots, the negative effects of Prednisone (gained 15 pounds), some salve/ointment that turned my scalp purple, – all the time they knew none was a cure. That there was no cure. A well-meaning relative even had me examined by the Mayo Clinic. I was also present (presented?) at a sort of dermatology convention – about 15-20 physicians paraded through my room to check me out. I now have the benefit of hindsight so I feel I was more of an exhibit (“Here we have a case of Alopecia Universalis in a 16 year-old female”) than a patient. Mine did have a rare pattern/progression of hair loss: no patchy loss is rare. I am pretty sure, anyway.

Anyway, moral of the story is: March 1995: My hair was completely gone, including eyebrows but not lashes – yet. They went in 2004.

So I sort of gave up around 1997 on getting my hair back. It was then that I began going wigless. I just couldn't stand them anymore. I DISLIKED being bald but I HATED the darn wigs. Mainly because I felt so forced to wear them. I had begun to resent the things which so ineffectively disguised my condition. I quit wearing them entirely for a few years. I felt like….I was hiding. As if I was ashamed. They even…maybe perpetuated a sense of shame? Maybe so, maybe not.

Another problem with donning a wig: Does it perhaps remind me of what I had lost? I mean, does constantly seeing the hair-that-is-fake out of the corner of my eye cause my frustrations to arise more quickly – because I am not only dealing with being bald, I am having to deal with TRYING to hide the fact that I am bald. Which to me seems stupid. That’s just me, I know everyone is different in regard to their feeling toward wigs and also how they feel about being seen bald.

I hated hiding it; hated trying to be something I was not. I am just SO thankful that I live in a time and culture in which people and the community in general are able to accept me and my appearance. I feel that becoming more comfortable with my own irreversibly altered appearance was central to me being able to appear most of the time in public bald and be able to enable others – strangers – to also be comfortable with it. I don’t know what I would have done if I had gotten a negative reaction. I think I have only been called a name once or twice, if ever. I really cannot recall being called a name. Perhaps I have blocked it out.

Back to my early years, I got to go to my last 18 months of high school in wigs and humiliated. Well in a way. Wearing wigs seemed surreal. Being bald felt like a nightmare that I might be lucky enough to wake up from. But I never did.

Now, 20 years (almost) later, I am actually thankful in a way for my AU. It has definitely made me a stronger person and has forced me to examine my self-esteem and purposefully worked to increase the… enthusiasm(?) of said self-esteem – to raise the “image rating”. Oh, you know what I mean. I felt guilty ditching the wigs because some of them had cost a pretty penny (only 3, really…two bought by my mom and brother, one bought by a boyfriend).

After going about ten years avoiding wigs like the plague, I started to actually enjoy wearing wigs again around 2010. I think it was because I came to regard them as an accessory that I was free each day to use or not use, it was MY choice. As long as it is not obligatory I can deal with it. I don’t want anyone to think I am trying to fool anybody. Although some strangers are fooled, I go with the assumption that everyone can tell it is a wig. Its one of those hope-for-the-best-but-prepare-for-the-worst situations. Anyway, that is all for now.