Reading the New York Times yesterday, I came across a Patient Voices article titled “A ‘Forest Fire of Hair Loss,’ and Its Scars” about one man’s auto-immune hair loss from alopecia areata.  He isn’t alone.  I also have alopecia.

A few years ago, I noticed a round loss of hair on my scalp.  I assumed I had somehow burned myself with a curling iron.  Moreover, the way I styled my hair hid the bald spot, and that it would eventually grow back.  A routine haircut led my hairdresser to ask about the hair loss and hypothesized about its origins, only to be proven correct when I went to the dermatologist.  I was diagnosed with alopecia areata, a disease with no predictability.  I am at the mercy of my body.

In high school and college, this meant I got away with some short & punk hairstyles, especially after I shaved the rest of my head to hide the missing growth.  When my hair grew back enough, I kept it in a tight ponytail to hide any bald spots.  I own a lot of hats & scarves.

It has been over a year since my last major hair loss episode and I am happily growing some new hair, most of it around 2 inches long covering the palm sized gap on the top of my head.  “Tufty”, as my partner and I have named him, does not easily hide himself or respond to hair products. I am in the most awkward stage of hair growth, which has forced me to speak about my disease at work and to friends more than I have previously.

Emotionally, having a lack of hair is more difficult. I had teachers assume I pulled out my eyelashes and eyebrows, and others told me my hair loss was due to “stressing myself out”.  Neither is true, and both led me to feel it was somehow my fault for having this autoimmune disease. Furthermore, I was comfortable with my body looking feminine and had associated my previous long hair with my femininity. I now faced alienation with my appearance every time I looked in the mirror.

I also face stressed out by my appearance at job interviews or when meeting new people if my hair is in an “awkward” state.  I’m terrified it plays a role in my continued job search.  My choice is to explain that I have an auto-immune disease during a first interview, which may lead an employer to think I’ll cost them more in health insurance or will frequently need time off, or to let them think I can’t brush my hair or dress professionally.

In many ways, I am lucky.  I have “patchy” alopecia, a form of the disease in which my hair responds better to treatment.  I’ve had a few episodes in which it was easy to hide because of my bald patch location. This disease has allowed me I have also learned to question the way society says I must look in order to remain “feminine”.  Through this analysis and other means, I’ve been able to reduce much of my body dysphoria.

But by having this disease, I’ve become aware of how I want my body to represent me, and how others interpret my body as representing me.  The need for both a personal analysis of my teenage concept of femininity and society’s reaction to my disease lead something wanting. I do not "make others uncomfortable" because of my hair loss.  That is the fault of a society uncomfortable with difference and unsure how to respond. This is the same societal problem faced by Kayla Martell, the 2011 Miss Delaware, who after years of competing with and without a wig, finally won.  She wore a wig this time, afraid that being bald would make her less “relatable and approachable” to others.