Alopecia World
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I Look Sick
"This disease must be doing wonders for my appearance, because people keep telling me how good I look."
I saw that on a sight called http://www.butyoudontlooksick.com which is created by a young woman with Lupus. For anyone living with a chronic illness that can't explain it to your friends and family, she has a story called "The Spoon Theory" which you should read. I didn't think I looked sick when I was able to do makeup, etc, just losing my hair. But then I looked at my before and after pics that I posted in my album here. The before pic was taken in March or so. I started dropping weight in December of last year, but I still had more good than bad days.
Now I can't help but notice the circles under my eyes and I had even used concealer which I rarely use. I have been able to gain 10 lbs after an aggressive course of corticosteroids. LOL, for a little while there, I would eat anything that wasn't nailed down! My mother had told me she thought I was anorexic, and I couldn't convince her I wasn't starving myself intentionally. Now she believes me. That 10 lbs added some fullness to my face, but I still don't look right (hair not included).
I really don't feel sorry for myself, but I want to look like me, not a sick version of me. Wigs, scarves and hats can't conceal it. Fortunately this disease (whatever it is) doesn't affect my smile and I wont let it break my spirit. The pic below is just a drawing I did before symptoms made holding a pencil very difficult.
I saw that on a sight called http://www.butyoudontlooksick.com which is created by a young woman with Lupus. For anyone living with a chronic illness that can't explain it to your friends and family, she has a story called "The Spoon Theory" which you should read. I didn't think I looked sick when I was able to do makeup, etc, just losing my hair. But then I looked at my before and after pics that I posted in my album here. The before pic was taken in March or so. I started dropping weight in December of last year, but I still had more good than bad days.
Now I can't help but notice the circles under my eyes and I had even used concealer which I rarely use. I have been able to gain 10 lbs after an aggressive course of corticosteroids. LOL, for a little while there, I would eat anything that wasn't nailed down! My mother had told me she thought I was anorexic, and I couldn't convince her I wasn't starving myself intentionally. Now she believes me. That 10 lbs added some fullness to my face, but I still don't look right (hair not included).
I really don't feel sorry for myself, but I want to look like me, not a sick version of me. Wigs, scarves and hats can't conceal it. Fortunately this disease (whatever it is) doesn't affect my smile and I wont let it break my spirit. The pic below is just a drawing I did before symptoms made holding a pencil very difficult.
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Comment by Joy on November 2, 2009 at 10:14pm
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Andrea,,you are right about your smile..its beautiful! I'm sorry to hear you are having health issues with the hair loss too! Your drawing is beautiful! You are beautiful and its the best thing to not let these things break your spirit or steal your life..good for you!!!!!!!
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Comment by Galena on November 2, 2009 at 10:20pm
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Thanks for sharing Andrea. I never had a serious makeup routine until now. Moisturize, mineral makeup, concealer, blush, false eyelashes, draw-on brows with pencil and powder, eyeliner on bottom no-lashes, face powder and lipstick...everyday...to look normal. A lot to go through in my opinion, but if I don't my co-workers will be in shock. I will look sick, so I don't go out that way. I can skip the wig away from work, but I must always have my face together to face the world. No brows is NOT an option.
So I won't sugar coat it for you because I don't know how you looked before alopecia. All you and I can do is be the best we can be--now. When I'm out bald, I get compliments that I don't accept (internally). And I try hard not to have my usual intense look on my face when I'm out without a head covering. Frowning and bald=bad, scary.
As for people saying you look great, BYDLS was a common refrain that I heard when I tried to describe to someone the challenge of fibromyalgia. Society still has a long way to go in acceptance and understanding of people with chronic pain issues. Awareness has helped, but it's day to day interactions that make the difference. Just like our hair loss, if we are willing to share our struggles we can be in a position to help others. I heard an actress who went bald for a science fiction role describe being bald in public as portraying both strength and vulnerability simultaneously--it has a powerful effect on people.
I like your drawing Andrea, at first glance I thought it was a photo. You are very talented.
Hugs,
Galena
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Comment by Lee on November 3, 2009 at 7:09pm
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Hey Andrea,
You will get used to it. Thats all Alopecia really does to us is mess with our image. So, once you beat that, you've beat the disease in my opinion. I looked weird for awhile, but with the right makeup and hair, I look pretty much the same as I did before my hair fell out. Not completly, but close. The eyebrows and eyelashes are the worst.
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Hey Aimee, I too lost weight on 20mg of prednisone per day. I felt anxious and experienced wild mood swings on it too. I tapered off and never took it again. My weight rapidly went back to the pre-prednisone number yet my eating habits didn't change. The only good thing about the steroid was that it kept the fibromyalgia at a longer remission of symptoms.
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Comment by Andrea on November 3, 2009 at 10:05pm
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Hi Ladies:-)
I thank you for the encouragement. I don't know yet if this is alopecia itself, or a symptom of the root cause which is most likely Lupus. It's falling out so quickly. 6-7 weeks ago I had a full head of hair and if it keeps falling out at this rate, I'll be smooth by Christmas.
Galena, if I am following your timeline correctly you had FMS for about 1-2 years before you started losing your hair right? I'm about 2.5 years since that was diagnosed but that is being reconsidered for another Rheumatic. If a doctor said to me right now "I can cure you but it will cost you all your hair" I'd take the option. Did you ever have a thought like that? My steroid course was very aggressive 60mg for 4 days, 40 for 3 days, and 20 for 3 days. By the time I was finished I was able to get out of bed for more than a few minutes and the effects have lasted for 3 weeks, but I feel the remission ending. Still, if I don't bottom out to the point of needing to go to ER I'm happy :-)
Aimee you went all the way to AU in just a year, right? I think your brows look wonderful! My aunt gave me 3 wigs she'd never worn tonight that are close to my hair color, and I ordered 2 tonight...one which is no where near my hair color! Redhead here I come!
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