living with alopecia

today is exactly one year since i have asked a barber to shave off the remainder of my hair. “remainder” is the key word.

one year and one week ago i started losing hair. it was a rapid onset of alopecia, completely out of the blue. to say it was a shock for me would be an understatement. i have always paid attention to my hair, when other aspect of my appearance went by the by. a lot of care went into picking just the right shampoo, into finding the hairdresser who knows how work with my type of hair, haircut appointments were a priority in my calendar.

then 70% of my hair fell out within a week. it was scary.

subsequent few weeks were an exercise in frustration, to be honest. especially in retrospect. none of the medical tests showed any problems. i was perfectly healthy, except going bald (and having dermatitis, but that’s chronic, well-known to me stuff). after last batch of tests a dermatologist told me that there are equal chances of a) hair growing back, b) growing back but temporarily, and c) never returning. final diagnosis shifted from alopecia areata to alopecia totalis, to alopecia universalis (and this is what i have in the end). that was all fine, it’s an understudied condition. what made me walk out of the doctor’s office were the options suggested to me – steroid treatments or wigs. like hell i would accept that.

by then i already had my head clean shaven, so i decided to just not hide it. no head scarfs and no wigs. hats only for warmth. it helped a lot that most of people around me were tactful and understanding. i would have much harder time, if not all the emotional support, from friends, family, and some from completely unexpected places.

my overall stylistic preferences made adjusting to new look easier too, and that i got lucky in genetic lottery and have symmetrically shaped skull. by now i stopped noticing lack of hair 98% of the time, and am able to find endless upsides to this condition.

my favourite jokes about myself now are all about my baldness: “it’s easy to cosplay The Ancient One”, “yes, i woke up like this too” in response to someone’s bed hair at work, and so on. i’ve no idea if others find it funny, but i do a lot 😀
i also find it very amusing that it’s now super easy for others to remember me, and that it became even more difficult to tell where i’m from.

i’m writing this in hopes to add something useful when another person would scroll through search results looking for some kind of affirmation during their own alopecia related situation. because when typing “dealing with alopecia” into the search bar, i mostly got advice on how to slow it down, advice on wigs, headscarves, and hair transplantation. all that did not help me in anyway. it sucks to lose your hair, it double sucks to lose hair when you are a woman in our current society, and it triple sucks when said society tells you to hide it.

so i want to add to a different angle of conversation around alopecia – how does it feel when you don’t hide it. from where i stand – it feels good.

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