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Coming out to friends and others
I realize Alopecia is not a life or death disease. I hate when I have the courage to tell someone and they say "there is a lot worse that can happen ". I feel like someone has died and am on the verge of tears about this. I feel ugly and have become a shut-in. I get it is not cancer! People do not know how much courage it takes to admit it to people.
Replies to This Discussion
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Permalink Reply by Carmen Dayhoff on
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Sending BIG HUGE HUGS to you. I'm sure things will get better. There's so much in your post to reply to I'm just gonna start by saying grief takes time. Mourning the unpredictable loss of your hair and the change in your felinity. The thing is, though this may sound cliché, beauty is far beyond our hair. Many women who have hair are not beautiful. For reason expanding from physical to their attitude. Your confidence is being challenged and finding a way to rise above and win over that challenge is the important part. For each person the answer is different. Be it eating right, exercising, strengthening ur faith, talking to a trusted professional, etc or all of the above, what's important is that you do you what is needed to build yourself up. And people will reflect how you deep about yourself and your baldness. They will know it in the way you explain the situation. Guilt? Shame? Confidence? What comes out in your tone? People are uncomfortable with what they don't understand. Don't mirror their discomfort. Get above it thru your own confidence.
I've had Alopecia universalis for 32 yeas being diagnosed at 3. I used to explain with guilt and shame. With lots of apologies and exceptions. Over time I got passed that. This is not my fault. There's nothing I can do about it. If someone can't handle they will have to deal with that problem of their own on their own time. The thing that has helped me the most is being a support group leader. I have taken my negative thoughts and experiences and channeled them into a way to help people locally. And I have developed a sense of pride in each accomplished meeting or event. And each time a friendship develops due to meeting through our hair loss. I still wear wigs. I have all my life. Though I've thought many times of giving them up I like having them. But I talk to people about Alopecia ALL the time. I'm very easy bout questions and comments. I let them roll off.
Things will get better.
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Permalink Reply by Stefanie Irwin on
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It is hard I think because some act like they pity me as well. I almost feel like every reacrion bothers me a bit. I work with seniors with dementia and they can be mean lol . One old man said "good thing you are already married!" then forgets and says it to me 6 times a day. I am at the point where I need to either shave it and get a wig (on one side I am almost completly bald as well as the top), but it is like I can't bring myself to give into it. I feel better hearing these stories though. I have never met someone with Alopecia so it helps. I wish there was more support in Canada.
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Permalink Reply by Debbi Fuller on
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Stefanie, a lot of people feel much freer once they shave their heads. It's like finally accepting the fact that you have alopecia and taking charge. Being in 'limbo' is harder than just taking the plunge. It's also MUCH easier to wear a wig over a bald head than it is to have hair. It opens up all the possibilities and all types of prosthetic pieces too. Where do you live in Canada? I know some people up there. As to mean people - sure they are out there. The old guy with dementia - you really have to not pay any attention to him. He has no filters anymore - poor guy. People will only pity you if you act like a victim. Once you have a nice wig - OR you just go bald and brave, people will stop pitying you and just consider you either totally blending in OR very brave!
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Permalink Reply by Lynda Hykin on
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I'm working on creating more awareness in Canada, Stefanie. I'm in Ontario. There is very little that I can find here (yet), and why I am so glad to have found this site.
email me and perhaps we could chat sometime ; diaryofabaldlady@gmail.com
Lynda
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Hi Stefanie, I'm in Canada. Where abouts are you? I've got AA which comes and goes, last lot was biggest patches I've ever had. Not told many people but those that do know have been great. 'Friend' me if you like. Sarah x
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CANAAF seems to only support children, as awesome as that is. I am trying to get something going. Perhaps we Cannucks can start something?????
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I'm in Hamilton, so very close to TO
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It's true. Many people don't understand how difficult being honest about AA could be at times. There's a lot that we can't control, our condition and other people reactions to it are very good examples. Most of the time it is nit because tgey are necessarily insentive ( although some are) but because the lack of information regarding alopecia. It could be frustrating at times but once you accept it it gets easier. The one thing that you can control is how you deal with this condition. Abd sometimes helps to take the opportunity to educate other about what alopecia is and its repercussions. Try to make the best of it. I wish you the best!
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Permalink Reply by janetparsons on
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I would love to be your friend from newfounoh my how true is this, I hate that!!! I have had au for 40 yrs now, and unless u have walked in my shoes uhave no idea what I go through, people can be so ignorant, but u know what, every dog has his day as we say in newfounldandand god will take care of them, hugs to u Stefanie.i would love to be your friend from newfoundland, I have no support here whatsoever.
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I live on Vancouver Island and I would love to be your friend!
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Permalink Reply by Mary on
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Your post and this discussion really hit home with me. I have FFA and so far have lost at least (maybe more) of both eyebrows. My hair is also thinning a lot along my forehead, at both temples, and on the sides. So far I can cover most of it with hair from top of my head but there is no covering the eyebrow loss. I am terrified of losing more hair. When/if it gets to the point that I can't cover it up, I would just want to run away and hide forever...perhaps even from my supportive hubby of 44 years! I really admire all of you who are so brave about this. I have dealt with a lot of health issues including cancer and heart failure, but this is getting me down as much, if not more, than anything else. I don't know why I am handling this so poorly, and I am frantically hoping that it will burn itself out before I have to face my worst fears about hair loss.
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