Why do I fight for a cure?

I have been AU for almost 15 years. I lost every hair on my body over a period of three weeks, and in the process, I lost almost everything. I lost my business because people refused to do business with me. I lost my day job because I no longer had a "professional appearance." I lost the vast majority of my family and friends, because no one wanted to be seen with me. I was told never to come back to the church I was attending because they thought it was contagious.

I fight for a cure because I am tired of being treated like trash. I moved back home to the Upper Midwest, and was extremely lucky to find employment as a Software Engineer for a medical company. I have to wear ball caps all the time due to the hideousness of this disease, and they allow me to do so, not under their ADA Program, but rather through their Inclusion & Diversity program.

I fight for a cure because I am tired of being tagged as someone that is mentally challenged. Though I qualify to be a Mensa Member, I choose not to flaunt it. However, in a law suit that had been filed by PETA against the zoo where I volunteer, in one of their complaints, they alleged that the zoo allowed a mentally challenged individual to work with the Grizzly Bears and American Alligators. Yeah, that "challenged individual" they were referring to was me. They saw the AU and just assumed, like most do, and I am sick and tired of it.

I fight for a cure because I am tired of looking in the mirror and not seeing ,me. There have been only two times in all these years that I have seen a reflection in a mirror without something on my head, and both times I vomitted, because what I saw was not me and made me physically ill. If there is any consolation, one time was when I was at a Hair Club office being fitted with one of their over-priced wigs, and they wanted a "before" picture. Some guy shoved a mirror in my face and he ended up wearing my lunch down the front of his jeans and all over his shoes.

I fight for a cure because I am tired of being forced to be alone most of the time. Sure, I share a home with 3 dogs, 2 cats, 3 ducks, a ferret, a rat, a rabbit, and 2 alligators, but none of them have the ability to carry on a relatively intelligent conversation. I have become rather jaded when it comes to sharing a home with someone, but it would be nice to have someone to hangout with, going to the movies or out to dinner. Sadly, it is not likely that I will ever have that again.

I fight for a cure because I want to start a German and Finnish food truck business. I paid my way through college as a Sous Chef, and now that I am nearing retirement, I want to go back to my roots. The hardest part about doing this is, even though I have the credit rating and side income to pay for building the truck, no one will load me anything to get going because they all believe that I have some sort of cancer, and they are afraid that they will loan me the money, I will die, and everything will wind up in probate.

I fight for a cure, because I want to have a life. I decided that 2020 was going to be my year and I want to have a life like I used to have before this hideous disease took hold. I have been working on my house, to make it mine, instead of the house I bought from my Aunt's Sister's Ex-Husband, thought I did plant a Lilac in the yard in his memory. I want to bring back the feelings I had when two friends and I went on a road trip to Marching To Be Free - DC '93 where we met RuPaul and The Village People.

I fight for a cure because I want to look in the mirror and see me, again.

Views: 1077

Comment by Carma Harper on March 22, 2020 at 6:01pm

I lost all my hair 3years ago and it was devastating to me. I do understand your frustration!! I have tried several kinds of treatments and nothing has worked so I have learned to get thru it with cute wigs and cute scarves. My family has been great with it. I am the one that was constantly upset over my hair b/c my hair was very important to me!! but I have learned that my true friends are just that true!! They love me for me not my hair!!! Hope this helps you!! I know it is hard!!

Comment by DaveW on March 25, 2020 at 1:33pm

It’s been 50 years now for me with AU.  I know people more readily expose their evil side to us.  There are some advantages in that way, though it took along time for me to see them.

Comment by Maurice on April 14, 2020 at 7:25am

There is lots of pain associated with this post. You are not hideous. You simply don't accept yourself, understandably so. But it is up to us to deal with those feelings, that's why I don't hide behind a wig. That's why I go out and about proudly, despite having AU. When I look in the mirror, I have tough days as well - but you know what, everyone does. It's up to you to look in the mirror and smile at yourself, you make that choice every single day.

Having said that, it's ridiculous that you'd get fired from your job for suffering under a circumstance that is not within your control. I've never experienced treatment on that level, people accept me for who I am. I'm sure that would affect me as well.

Comment by Patricia on April 30, 2020 at 3:30am

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Don't suffer like that its heart braking to read.

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Comment by wendy on July 12, 2020 at 4:07am

Great to read other people  experiences from the AA family. I have been fighting with my hair for over 10 years now, it is now the worst it has ever been. I fight for a cure, to help all of us get through our day to day activities. Most days we can except what is or has happened to us but some days you just wish it would be like everyone else who have hair. 

Comment by Tatiana on October 19, 2021 at 10:06pm

Very negative and depressing post. Just accept it and move o . I had alopecia totalis for the past 8 years and deal with it.  My business in cosmetology field is booming, I have more friends than ever, I date couple of people just for fun and they know about my condition. I tattooed my eyebrows and made an eyeliner tattoo to imitate the eyelashes .I wear beautiful wigs and started wigs business also. Life keeps going!

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