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Hello everyone, as usual, I am momentarily depressed about my hair so I would like to ask you some questions. Since the onset of your alopecia, do you find a change within your character that has made you the way you are right now? For example, some of you have become quieter. Some of you have learned to be humble. Some of you have learned to be confident. Some of you have acquired the "I-don't-care" attitude. Some of you have become outgoing and bubbly.
I've definitely become a humble person. I don't know how to explain but after going through a lot in the past years, I have learned to accept the pain I'm carrying within myself. For example, some people can be rude and show off whatever they have - their luxurious clothes, fancy car, designer clothes, beautiful hair and skin, et cetera. But I've learned to be kind to people because you never know what they are going through at the moment.
In what ways has alopecia changed you? If there's any change at all?
Thank you.
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I take more care of my appearance these days. After 20+ years of AU it has taught me to make the most of myself. Before alopecia I hardly wore makeup and mostly wore jeans and tee shirts but now I try hard to look my best. I wear makeup, have had my eyebrows and eyeliner tatooed and I wear wigs. I hated how I felt so unattractive and looked so ill with all hair, eyebrows and lashes gone...it wiped my face of colour.
I have felt self-pity like I never experienced before AU. It's a horrible feeling and one I'm glad is now gone.
After contracting another auto-immune condition that is painfully debilitating I am grateful that hairloss is the least of my worries today.
I don't worry what others think of me today. I surround myself with positive people who aren't into pitying me and who encourage me to be the best I can be.
I have gained confidence along my journey with AU and that is worth a lot.
Alopecia has done a lot for me - none of it good. My teenage years were fraught with self- consciousness, pain, unworthiness, no confidence, inability to make and keep good friendships etc etc. Alopecia has stunted my growth as a person. It has caused me many years of dreadful emotional pain and damage. I feel I am a damaged person. Add to that the grief I feel at not being able to have children and add to that too the pain of having had someone defraud us (my husband and me) out of our life savings (including our house) and now being totally dependent on the good will of wealthy in laws for somewhere to live. Nope - alopecia has not been a great experience for me at all - but is it for anyone? And who else cares anyway?
Ellyn, you have certainly had a dreadful time of it. I think that adults who had alopecia as children have often had the hardest time of all. It was not accepted as much years ago and there was no support. You do have the ability to try to change things though. The defrauding was not because of AA but because there was an evil person who did evil things. Don't turn that on yourself. There's still time to try to forge a new relationship with yourself and your alopecia. Read some of the really inspiring stories and see some hope there.
Yes definitely. But hard to say to what degree because since I was sixteen when it struck and getting a bit full of myself--as teenagers will do. My self esteem suffered SO badly at first but since I have re-emerged stronger than ever. It took me about three years to fully accept and portray myself as a bald woman. To accept the inevitable? But I feel so empowered about it now; like: oh so you need me to have hair? I don't even need me to have hair lol! So you are not ALLOWED to tell me I need to appear as is I've got hair (read: wear a wig). But I know that is not the choice for everybody, wigs are fine too. I just don't like wearin em, that's all.
In a funny way Mariam, some of all of the above. I'm confident - much more than when I was young, but that is not because of alopecia, it's because of age. The "I don't care" was acquired over time and is also somewhat due to getting older. I don't think I'm 'humble' but I definitely look at people's troubles differently now. I also see a lot since I provide some wigs to cancer patients and I always remember how lucky I am to have alopecia and not cancer. I already was outgoing but became withdrawn when I first got AU. After adapting to the alopecia (in some ways due to being with Pan Am when Lockerbie happened - it helped me get the alopecia into perspective), I became very outgoing again. Because of my job, being 'out' is the only way I can be. I think the biggest difference between us is that I can honestly say that I carry NO pain within me. I am grateful for my AU and I embrace it. I've learned to actually LIKE having hair only when I want it. Age helps with this. Think of Kathy Bates character in Fried Green Tomatoes. Rent it if you haven't seen it.
I also like to go to the pool and amusement parks. I wear my Nammuhats in the water and a chemo cap I sewed on the roller coasters, glued to my head with It Stays adhesive. I'm usually the only one with a headcover too but have fun regardless.
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