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Moving On


My Story

“It’s just hair.” I was getting really tired of hearing that. People kept telling me, “It will grow back, don’t be so negative, besides you can’t even notice it.” Maybe they were trying to keep my spirits high, but it did little to comfort me. My hair had fallen out in the usual bald patches over the past six years, beginning when I turned 30. It always grew back. But in my heart I knew this time was different. It was falling out at an alarming rate. The first dermatologist I went to told me to stop stressing and to apply topical steroids to my scalp twice daily. They didn’t work and over the next three months my alopecia areata turned into alopecia totalis (total scalp loss). I couldn’t believe how fast it all happened. I had long thick brown hair and now my scalp was riddled with bald spots, two spots turned into five, and five turned into too many to count, and nowhere was my hair re-growing.

 The biggest question I had was, why? Why me? Was I being punished for some reason? Is this something I need to go through as a humbling experience to make me a better person? I looked for answers. Did I think I was hot stuff when I was younger and now I have to deal with karma? I decided not to think that way because it wasn’t helping and I was just feeling sorry for myself. 

I cried every morning as I brushed my strands of hair; finally I cut my hair very short, which was a relief because I no longer had to see my hair on everything from the shower drain to supper. Good, I thought, no more reminders that I’m losing my hair, until I looked in the mirror. Never in my life did I hate seeing my own reflection. The baseball caps I had been accustomed to started hurting my swollen head, so I started wearing scarves and believe it or not, you can have a lot of fun with them. 

I decided to stop crying and move on, not for me, but for my two children. I’m sure they wanted their Mom back, hair or no hair. I had to be a role model. I wanted them to see someone who could handle her problems and hold her (bald) head up high. I knew this was affecting me, physically and emotionally, but I also became aware that at times I was an embarrassment to my children. When my son asked me not to come to the Christmas party at school it broke my heart, but I understood. He is a good child but I had to give him some more time to accept the new me.

In the meantime, I did my research online and decided to seek the advice of a different dermatologist. She prescribed prednisone (an immunosuppressant), with really awful side effects, like weight gain and insomnia. I found myself baking cookies at midnight. After 16 weeks of treatment and 10 pounds later (all those cookies) my hair started to grow back. My old hair didn’t return. My new hair was spotted black and white and it came back at different times. But hey, who am I to complain. I realize that it may not last, but I’ll be okay. Anyone who goes through this automatically becomes a stronger individual. I know I didn’t choose this, but I have learned so much.

I know there is no cure and certain treatments work on some and not others. I know that a lot of people have the misconception that this disorder is the result of a low immune system, and quite the contrary is true. My immune system is high, so high that it not only kills the bad cells but the good hair cells as well. And I don’t know why it happened. Some say stress, which can be true in some cases but not all. When I see two year olds with this disorder, I think there are certainly other factors at work. I know that this disorder is extremely unpredictable. Part of my eyebrow has been M.I.A. since last week. And most importantly, I know that I am not alone. I found comfort in reading the stories of individuals like myself. That was especially true whenever I would have one of my mini-meltdowns and my family didn’t know the right words to comfort me, because they couldn’t understand what I was going through and why. Sometimes the only person that can understand you, is the one who has lived through it themselves.

And with or without hair, you are still the same person.  

I guess they’re right, it is just hair.


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