at least it’s just hair

This is me. This picture was taken on my 35th birthday. I had a full head of long, curly hair my whole life. At 30, my eyebrows started falling out. After my first daughter was born, I lost about 80% on my hair on my head. After my second daughter was born, I lost all my hair in my body, including my eyebrows and eyelashes. I’ve had a mixed relationship with my alopecia. I tried everything to stop the hair loss. The hardest part, though, was some of the things people would say to me. No one was ever deliberately mean, but they were thoughtless and would project onto me how they felt about my alopecia, unsolicited. Or they would compare their hair complaints to my alopecia, as though they were the same thing.

The hardest one for me to hear was “At least it’s just hair”. My body was (and still is!) going through so many other internal changes and symptoms. My hair loss was an outward representation of something terribly wrong in my body. Emotionally I’ve grown to embrace, or at least accept my alopecia. I’d obviously prefer to have hair on my head (and eyelashes!) However, I know many in the alopecia community who were devastated by their hair loss. No one should ever tell someone how they should feel about their illness.

At this point, I’ve become grateful for my hair loss. After so many doctors have blown me off for other symptoms for so long, the alopecia waves the red flag that something is up. I’ll take the silver linings where I can find them. 

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#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #chronicfatiguesyndrome #CSF #ME #butyoudontlooksick #invisibleillness

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2 Comments

  1. Totally agree with you, no one should ever tell someone how they should feel about their illness!
    I get the “aaaw, you look horrible, I can tell you’re really ill today!” a lot and I’m just “no, I just decided on not wearing any make up… but thank you?”

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