Right after I lost my hair this week in 2008 at age 56, I was in contact with two women who were putting together a documentary or a blog about alopecia - I don't remember what - named Margaret and Laura, out of NYC.  They interviewed me via Skype but I never found out what, if anything happened with that production.  Recently I did find a Facebook page for them:  https://www.facebook.com/search/posts/?q=women%20behaving%20baldly. ; In the course of our intereviews 13 years ago, they asked me to write down my initial thoughts when I lost my hair, and this is what I wrote: 

I only cried twice when my hair fell out:  (a) the day I went up to the hairdresser’s in Egg Harbor and she shaved my head – following up with the comment, “anyone I  ever knew who had this type of alopecia never got their hair back!” and (b) the next morning in the shower when I saw my silhouette in shadow on the wall from the overhead light – a bald head with ears.  It really hit home at that moment.  Everything that happened before that – the initial bald spot at the hairdresser’s, the drifts of hair in the sink, having to wear scarves, and ordering my first wig – happened in a fog of numbness.  I have cried many times since then – but only in frustration over the itchy wigs, the eyebrows that fall off, glue, glue, glue EVERYwhere from the glue that holds my skull caps on to the glue that holds my eyebrows on.  Frustration over the never-ending eye problems that are in addition to the age-related eye problems that I have.  No eyelashes is a BAD thing when you have bad eyes – or ANY type of eyes.   Things get into them and can scratch your cornea or stick to your contacts and take an age to get rid of.   It’s hard if not impossible to get a decent eye-line where it’s supposed to go.

 

Hating to have my picture taken now because no matter how I paint my eyes, they never look the same anymore without eyebrows. 

 

The side effect of having no pubic hair is the necessity of having to really wipe yourself all over because the pee goes all over, with no hair to “direct” the stream.   

 

Regarding the femininity/sexuality issues:  again, there’s the issue of aging (and therefore diminished sex drive), weight gain (I don’t look like myself) and no hair anywhere – it doesn’t look attractive to me – in fact, when I see myself in the naked in the mirror now I only remind myself of a victim of Auschwitz – except for the fat rolls around my gut & thighs.   Not a pretty image.   Thank god none of this bothers my husband  - I can’t imagine why.  I think it would bother me; I don’t know.

 

I used to wear colourful and eccentric clothing AND accessories.  The accessories were mainly scarves, and I built my reputation on them.  I never wear scarves any more because they push the back of the wig up.  I don’t  want to get rid of them because I think in some far-off corner of my mind I might get my hair back.  In the winter I can’t get hats on over the wig so I go without. 

 

And lastly – while I am grateful that I don’t have cancer, it gets very weary having people say “aren’t you glad you don’t have to shave your legs”, or “think of all those little kids with your condition”.    Now the people that say these things are generally not friends or acquaintances – they’re the women at Curves, or other volunteers I might work with – that sort of thing.  My friends never said those things to me unless I joked about them first.  I know people are probably stumped over what to say to me, I know they mean well – but in the back of my mind is the thought that, while I agree it is terrible that kids with AU are made fun of – after all, I was bullied (for different reasons) as a child – but ultimately, how can their situation be as bad as an adult who has to change their self image and attitude overnight?  After all, you can’t miss what you never had in the first place.  I know this sounds petty and immature – but nevertheless, I think it.  A lot.  People are always telling me to contact Locks of Love, not knowing that it is a resource only for children, not adults.  I often wondered – what happens when the children turn 18, or 21 – does Locks of Love then say goodbye?

 

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Comment by Jona on July 18, 2021 at 12:32pm

Hi you mention Egg Harbor. So do you live in Wisconsin? I live in Plymouth and have lost all hair since 2018.  Then last summer diagnosed with stage 3 ovarian cancer and said at least I don’t have to grieve my hair loss. Losing my hair was tough and I had my eyebrows micro bladed about 3 years ago I think. I do miss my eyelashes. Would love to connect

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