Alopecia World
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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.
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Comment by Gabe on March 17, 2020 at 2:39pm
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I too have struggled with my identity with alopecia. It wasn't until recently that I realized how often I would pass by a mirror and try my hardest to avoid looking at my head and thinning eyebrows. It took painful experiences with deep discomfort to finally make my decision of acceptance and self-love. I'm always sharing alopecia experiences on Cheltenham Ave. You're not alone. You are more than your hair. I'm looking forward to a cure and hope in the meantime you can continue to find support with all of us who live with this disease.
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Comment by swifteddie on March 18, 2020 at 3:01pm
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I am bald as a basketball. I lost my hair and raised my personality! For some reason God wanted me hairless. The end result was an attitude and cost savings, I won on both sides.
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@TurboK I feel your pain, for some time now I have felt bad going to doctors and complaining about an autoimmune condition that is not life threatening like many of the others but at times it's certainly felt life-ruining. Have you tried any of the JAK inhibitors that are having a high degree of success? Xeljanz, Barbicitinib or Ruxolitinib?
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I fight because it is not just hair. It is ny heritage. It is a disease my body is attacking itself. I am tired of being told accept it. It is a disorder abd deserves as much attention to it as any other.
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I have had this disease for over 30 years, what I would advise you to do is to stop seeing it as "hideous", there are far more terrible diseases out there, it is awful for sure but it is definitely not the end of the world...unless you let it. And don't waste your time "fighting for a cure", it will most probably not happen during our life time so get on with making your life the most incredible thing it can be regardless of how much hair you have, if you are shackled down by the idea that there is some kind of solution around the corner that will magically grow your hair back then you will never move forward. Sorry if this sounds blunt but I really feel like you are holding to the idea of a "cure" rather than moving forward as the person you are now. Good luck xx
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Comment by dreamscometrue on March 18, 2020 at 3:37pm
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I fight because I want the part of myself back that my kids never knew. I fight because inclusion and diversity are just labels that dont work. I fight because future generations may not learn compassion from this generation. I fight because I dont want to be treated like a disease. I fight because something so simple makes the greatest impact. I fight because I know in my heart, there is a cure.
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Comment by Renee on March 18, 2020 at 7:01pm
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I have been AU over 30 years now as I was age 12 when it happened. I know it can be very difficult. I think we all respond differently to it and maybe go through different phases too. I was thinking that you would be a great lobbyist on Capitol Hill for this years NAAF Conference in Washington D.C. And by the way, you look beautiful in your picture.
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I want to thank you for sharing your story. It meant a lot to know that I am not alone. I’ve had alopecia for over 20yrs., at first I was able to hide but as the years passed I eventually lost all of my hair. It’s hard dealing with the isolation, people just don’t wanna be associated with a bald woman. But I have learned to take one day at a time, I do have my family that loves me very much and I’m thankful for them and my faith.
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- I have been losing my hair over last 15 years, now I can't go out without a wig. I have hair on half of my head. My hairline starts way behind my ears and I'm all forehead. I have no eyebrows. I would like a cure but I'm not holding my breath. I live my life and enjoy it. I just wonder how are you all fighting for a cure, what is envolved? In the meantime live while you fight!
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@Lola, I have been losing my hair for 39 years, now Im AU. I still havent lost hope as I've seen some who have fully recovered with many different kinds of treatments. If you choose to not hold your breath, you have lost hope. Thats your choice. All of us here that CHOOSE to fight have not lost hope because research and some who have recovered PROVED there is hope. We are all still breathing and living. Fighting does not mean anger, it means hope for a cure. So while you choose to be cynical of those of us 'fighting for a cure' make sure you dont forget when there is one who FOUGHT for you to reap the benefit of that cure so you can have hair.
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