My affliction (or Why I Shaved my Head)

I don't talk about it much because, until recently, I hid it well.

I "suffer" from a condition called Alopecia Areata. Short explanation, I have bald patches all over my head due to hair loss. Longer explanation, I have an autoimmune disorder where my scalp views my hair as a foreign entity and attacks my hair follicles causing the hair to fall out. This leaves behind round bald patches all over my head, which increasingly expand and merge into larger patches.

I say "suffer" in quotation marks because there is no pain, other than maybe the treatment of sub-cutaneous injections of steroids into my scalp every 6 weeks. Or the pain in my heart when I dwell on the problem.

I had my first outbreak in my teens. Most people were not aware. Some who noticed would ask why I was so dumb as to shave my head in patches. I don't recall it bothering me too much when they would ask this, as it was their ignorance and had nothing to do with me.

Even until recently most people I told could not even tell, other than I have thin limp hair, but hey, lots of people have that problem.

During my teens the outbreak only lasted a short while, was never very bad and went away after a year or two, I barely even remember. This time I have been living with it since July 2008. We have no idea what brought it on, what's keeping it going or how to stop it. In a panic once in 2009 I threatened that if it got worse I would cancel my wedding, it got worse and I still got married. In a moment of seeming clarity I said I would not have a baby until it cleared up, it didn't clear up and I am now a mother. And I always said I wouldn't wear a wig unless it got really, really bad. A week ago I wore a wig out to dinner, and the next day I bought two more.

I wasn't hoping, but wondered if maybe hormones during pregnancy might clear up the problem. I knew it wasn't realistic but I speculated that chemical changes after child birth might correct the situation. I didn't expect anything but thought breastfeeding might strengthen my immune system. None of these things came to pass and my hair loss is now the worst it has ever been.

My thoughts are now whether or not I should just shave my head. My daughter and I start Baby and Me swimming lessons in a couple of weeks and I can already see my bright, white, scalp spots gleaming brightly through my stringy, wet hair as I meet other new Moms like me. Having to explain the condition repeatedly. No I don't have cancer. No it's not contagious. I hope we do an "introduce & tell us something about yourself" at the first lesson, only have to tell it once.

Overall I like to think I deal with the whole thing really well. I feel like I'm more worried and anxious about my hair when the condition is dormant than when it's falling out.

In the world of horrible conditions I got off easy. My condition attacks my vanity and my pride. I have no pain, no physical discomfort, no suffering. If given the option, I would not trade this in for something else.

I'm glad my daughter seems to have been born with my husbands hair.

I wish I liked wearing hats.

With love
~sarah~

Update

I finally shaved my head yesterday (May 17th).

My hair loss had continued at an increased rate and I was finding it everywhere and it was just adding insult to injury.  However, even with what little hair I had before I shaved it, it sure makes a huge difference when I look in the mirror.

The positive reponse I've received from friends and family and online friends has been amazing. I'm so blessed to be surrounded by so much positive support. It has made this part of the journey so wonderful.

Thank you!