When I think of the word Alopecia, I feel an intense feeling of loss. It’s more than a loss of hair; it’s a loss of self-worth. The discouragement it brings takes every breath of courage and suffocates it. I wanted to write about this disease so people will grasp the severity of what’s happening to over 5 million people in this world.
I started losing patches of hair when I was six. At this time I lived in a different country, Wales. I remember the kids teasing me, saying that a dog had given me rabies. This was devastating for a child and it made me an outcast. I had all the advantages as a child, but no amount of money could fix the unfixable.
My mother took me to a doctor and he prescribed some sort of black tar shampoo… which may or may not have put my Alopecia into remission. It wasn’t until we moved to the states, and I had been in school for a few years, that my hair started falling out again. This time there was no shampoo and doctors who said we don’t know what is wrong; we suggest you buy a wig. I was in the seventh grade. Need I really say more? I guess I must… for no one is listening.
We all know what bullying is. Back in my day in school it was much worse than today. I lost most of my popular friends. And of course my football quarterback boyfriend dumped me when it starting happening, for a girl with long beautiful red hair. I was teased and my wig was pulled off. I was almost suspended for fighting right before graduation because I beat up a boy who pulled off my wig. All the girls did back then is hair. It was the 80’s…big hair. My lack of it made me different. I felt always judged and looked upon as not acceptable. This disease has taken everything from me. I know that sounds extreme, but think about your self-worth and where it gets you. Think about your courage and what it allows you to do. Think about your self- image and how it makes you feel.
“A woman’s hair is her crown,” Does this sound superficial to you? I cannot flip my hair or bat my eyelashes in a sexy, flirty way. If you can imagine never feeling sexy EVER!!! Then you can feel what we feel. You… or a million others could tell you that you’re beautiful, but you NEVER believe it! There is no convincing, there is no making it better, there is no you’ll be okay.
Every day I wake up and I have no idea what this disease is doing to me… I have no recourse of how or what to do to prevent this from progressing to a more serious nature. My immune system is critical is it not? Well if it isn’t working properly then it must be cause for concern. Well, nobody can tell me anything. Minimal research is being done, and not many people are even aware the disease exists. It has been labeled “cosmetic”. Seriously, I’m supposed to just live with it. It’s ok… I’ll just dress myself up like you… so you don’t have to see the real me. If that will make you more comfortable, by all means I will be uncomfortable. I know you can hear the sarcasm in my voice by now. I really have no other recourse to explain; except sarcasm, anger, and frustration.
Let me give you an ordinary daily dilemma for an alopecian. It is 90degrees outside and windy. Shall I sweat profusely? Take the chance my hair may fly off and I’ll be chasing it in the Wal-Mart parking lot. So will I wear my wig so I don’t draw attention to myself, or will the actual sweating and holding my hand on top of my head draw more attention? Or should I just wear a hat and end up in several conversations with people either talking about someone they knew who has cancer… or of course about myself and how at least my Alopecia isn’t killing me. I don’t want to be compared to people who have Cancer. I don’t know if my disease is killing me… I have no idea why my body is doing this. I literally cannot leave the house without my wig on… without having to talk about IT with someone, somewhere, EVERYWHERE. And if by chance I get through a day without talking about it, there is always the hair obsessed people who, unbeknownst to them, never fail to make me feel like an ugly duckling. Anyone who knows this story hopefully can see how I may relate. It wasn’t until the duckling became a swan and looked like the others, that he was accepted. Well, I can dress up like a swan, but at the end of the day, I will always be the ugly duckling.
So what does a person do with that? I must bring your attention again to just how many persons 5+ million people. That is a lot of insecure, angry people in the world. 2% of the world’s population may have no self-esteem. Finding words to describe the emotion that is involved within this disease is very difficult. My feelings are individual…and so are the others suffering. Their story is not my story too. So as to the degree of how much damage this could be doing to so many people is alarming to me. This is why I chose to say all these things so blatantly. We need answers… there is no settling, accepting and moving on. We will not stop speaking out!
I want to thank everyone and anyone who has devoted their time to our cause. This article written in anger was not written to belittle anyone’s positive efforts toward a cure.
That being said…Having Alopecia is crippling the spirits of human beings. From my perspective it has swallowed my dreams and spit them in my face. Harsh I know…finding the words… like I said is VERY difficult. And no I do not see my glass of life half-empty… always half-full. Ah but a full glass…I wonder what that would be like? Using metaphors is fun, in other words… I am not complete. My body thinks my body is attacking me. It almost doesn’t make sense doesn’t it? I’m stuck… somewhere where the words have not yet been made to describe it. Trapped somewhere you don’t want to be… not knowing if there is a way out or not?

Views: 167

Comment by Dominique Cleopatra on September 6, 2013 at 4:19pm
I wear a bonded-on hair system, and it stays on all the time, covering my patchy AA. There is no way it could ever "blow off" in the wind. It has given me my life back! Many people also wear false eyelashes. Please seek alternatives such as these that will enable you to embrace your sexuality and womanhood, and regain your zest for life and confidence in yourself. Many women feel beautiful and sexy bald, and so they are, but there are hair systems, lace wigs, vacuum pieces etc. that are available and that are virtually undetectable. I was bullied horribly in school, and didn't even have alopecia back then, I know how traumatic being ostracized from your peers can be, but it is time to stop lamenting the bad hand you've been dealt and start playing the cards you have been given right! :)Also, most with alopecia are otherwise often healthier than their haired-counterparts, so I wouldn't worry about your condition leading to physical ruin. You are healthy. You are alive. Don't waste another minute of this precious existence.
Say this Serenity prayer with me: "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." Peace be with you my alopecian sister <3
Comment by Cindie on September 7, 2013 at 12:11pm

You are a very attractive woman, Emily. I, too, wish you serenity and peace. Truly, I know the feeling of being bullied.....before alopecia, as Dominique Cleopatra said. Alopecia was just the "icing on a very horrid cake."

But as I get older, I find "peace", because I don't want to continue to live on this earth an unhappy bald lady! I want to be like the brave, alopecia sisters here, who are an inspiration to me.

I hope they will inspire you, too.

Comment by Sofia on September 25, 2013 at 2:17am

Reading this made me so sad. =(

From your picture you're really pretty Emily! I hope you find your peace and someone that will love you for you. I was terrified but I opened up to someone, and I'm glad I did because he became a lifelong friend who loved me for me and called me beautiful everyday, told me I could be a model, and meant it too. Other people can't accept you if you can't accept yourself, they won't ever understand. I accept you though!

- Hugs from Texas

Comment by Emily on September 25, 2013 at 9:42am

I want to thank you from the bottom of my heart for all your comments. I wrote this article to show the negative side of this disease, for I am a writer. I am a very content person otherwise. I am happily married and have coped very well with my Alopecia. 37 years is a long time to adapt. My point being I would gladly write about all the positive things that Alopecia has brought into my life. My intent was to open peoples eyes to the negative impact and how vital it is we find a cure. So don't be sad for me...but let's not ignore or push aside any emotions. I don't want to be bald. I have free will and a desire to understand. I also crave to explore other peoples emotions on this issue.
Thanks again for your compassion

Comment by Cindie on September 26, 2013 at 10:39am

For sure....there is a negative side to this disease....and my heart breaks for children and teenagers who are affected.....I must say....I was HAPPY to read that you beat up the boy who pulled off your wig in high school. That happened to me as an adult, and I SHOULD have beat the person up who did it. Because alopecia is a disease, we are humans, and pulling off wigs and calling names is no joke.

Comment by Lexi on December 24, 2013 at 6:54pm

I can surely relate to what you wrote about my wig blowing off in the parking lot.  And a bonded system?  Yes, that is great.  However, it is not all of us, or even many of us that can afford that type of system, and has the time for the maintenance, and further cost. Some people have great alternatives for hair loss, and look and feel wonderful.  But these solutions cost money, time, and trial and error, which also costs $$$$

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