Alopecia World
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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 Sharon on
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I know how you feel, and I know that it is hard to tell people because it is hard to know how they will respond. Most people will surprise you with kindness and understanding. Part of the problem is that people just don't know how to respond to things they don't understand. Whether it is the loss of hair or the loss of a loved one, people will say the stupidest things to you. After a while, to amuse myself I keep a list of the stupidest things people have said to me in general, it actually makes me smile a little. The top place stupidest thing everyone ever said to me had nothing to do with my hair, but rather a comment made to me when my mother passed away when I was in my early 30's. Someone said "how does it feel to be so young and have no mother", seriously who says that stuff? Stupid people. That said, apart from family, I choose very carefully those that I tell and even more carefully those with whom I actually discuss the issue. I wear the nicest wigs and hair options I can afford, have learned great eyelash and brow techniques and look better than most women my age. It took me awhile, but I have learned to play the hand that was dealt and move on to things that matter more, worrying less about those who don't understand or accept me and embracing those who do.
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Permalink Reply by Sara on
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All of us who have alopecia have heard this and it isn't particularly helpful. Losing your hair is a devastating blow to your self-esteem and frankly, no one who hasn't "walked in our moccasins" knows just how much it affects your life. You are right, it does take courage to admit it to people, but it takes less and less courage the more you can accept yourself. This is a journey that we all make.... it took me a very long time. I was ashamed to admit my AU for many years... now, while it isn't the first thing that I say about myself, I do normally share it with friends. Don't be a shut-in... that will only make things worse. For now, find a wig that makes you feel great and get out there. Make-up or tattoos can help with missing eyebrows and eyelashes. People will notice your smile and your confidence right away!
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They are probably trying to make you feel better, and they may not know what to say. Don't be a shut in, why punish yourself, you deserve happiness and a good life, just like people with hair. It takes time to grieve your loss but be kind to yourself and live your best life without regrets. People may not understand Alopecia, but that's not your problem, there will always be plenty of people that do not understand, and you have a good life to live - happy. You are beautiful with or without hair!
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Hi Stefanie,
I completely understand what you're going through. I've had AT for almost 20 years, and learned to accept and cope with the situation because I still had lashes and body hair, and for the past year my lashes are falling out. Just yesterday, when I cried to my friend about losing them she said the same thing "well it could be worse". Ugh! Exactly, we're technically healthy, able bodied and full of life but goodness, this disease definitely takes a toll on your psyche and self confidence. I think a good response could be, "you're right, it could be worse, but it certainly could be better and this is really difficult for me right now". Because it is real difficult right now, and tomorrow it could be very different :)
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Hello Stefanie
I so hate that comment....well of course there is worse that could happen, but the reality is this has happened to you and that is difficult and sad.
I think people say that to try and help, but it is thoughtless and confronting. I had a friend that said the exact same thing to me. (My daughter has alopecia). I answered her by saying that I understood it wasn't life threatening but it was horrible. (Her daughter was the same age as mine) I then went on to ask her if she would mind if I popped around this evening and shaved her daughters head....then in a couple of weeks I'll be around to shave off her eyebrows and remove her eyelashes... after that I might let them grow back but won't tell her and right before her daughters Ball, later in the year I would pop around and just shave half her head take all her eyebrows and leave half her eyelashes....... By the end of my little rant (I wasn't rude) but I was assertive....she totally got what she had said and how thoughtless it was. Sometimes it's ok to tell people they have it wrong.
You aren't ugly and you can get through this. Please don't shut yourself away, become proactive around finding things that make you feel like you again. Look at all the alternatives that could make you feel comfortable with this condition, (Hats, scarves, wigs, etc.) Talk to the ladies here that prefer to present themselves without anything. They are an amazing resource to chat to.
Hang in there, your joy will return...just sometimes you have to work a little harder to find it.
Hugs
Rosy
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Permalink Reply by Brandy on
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So far, I've gotten close to 100% positive responses when coming out to people as a bald person who wears a head scarf. My self defense instructor was supportive, my choir director has no problem with me wearing a head scarf to performances, and everything is fine at work. My only negative responses were from my mother and uncle, who think that I should hide my condition with a wig. I have heard of folks having trouble with bullies, but none have assaulted me.
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Just want to segway on Sharon's comment that she "looks better than most people her age". That's probably how I came to make peace with my lack of hair after 3 years of absolute agony (mine is permanent hair loss from Taxotere chemotherapy - it happens). Two things really helped me - a blonde (rather than gray) wig and eyelash extensions (I have enough puny lashes for them to work), and tatooed brows and liner. During my lashless period I also learned how to apply false lashes and they can look good too. I'm 66. I look at many women my age who have full heads of hair but who have just let themselves "go". I can't do that because of this hand I've been dealt. I also know I'd feel differently about this if I was 36 instead of 66. My scarves and hats are stylish when I wear them instead of a wig. I think I look better than I would have had my own hair all grown back after chemotherapy and know I look better than a whole lot of women my age without any plastic surgery or botox! I think I look good for my age and not like someone 66 trying to look 40. Or at least that's what I tell myself.
You don't have to tell anyone anything if you don't want to. Most people don't ask because they don't know what to say. Really ticked me off when I was on chemo and as bald as a cueball and people would not say a word! I am open about my problem - maybe because I sometimes think I need to give an explanation for my "cute hair" or "beautiful eyes". That's me, tho. Please don't shut yourself in. But do recognize that it may take time to come to a place of acceptance and comfort with our plight. Is counseling an option for you?
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At home I go bald but keep a cotton head cover nearby in case my son stops by with friends. At work I wear a wig. I've always had short hair and my hair fell out in three weeks last year. I bought a wig when it started and when we got back from vacation, I came to work with the wig. My co workers obviously knew my hair color and length couldn't have changed that much in ten days. I told everyone that it was a wig and I was wearing it because my hair fell out due to a condition called alopecia. Since then, with my husbands advice, I have had some fun with it. I have the original wig, a blondish short flip, a darker all one length one with bangs. No matter which one i wear, customers tell me how nice my hair looks. I use eyebrow powder I apply with a slanted brush and outline my eyes with a soft, waterproof eyeliner pencil. I wear glasses with a dark frame so i dont think the lack of eyelashes shows. I'm a clutz and have only tried to apply false eyelashes once ... Big fail. I feel pretty in my wigs and not having to keep the "secret" took lots of anxiety away. The women I work with are all younger than me. Although a couple of them had questions about alopecia, no one over reacted. Good luck hon. Do what is best for you but don't close yourself in.
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Permalink Reply by paula on
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i think this happens to all of us. to make a point for both sides, i certainly know how you feel. sometimes i equate it to a comment like " well, i'm sorry you broke your leg but at least you did not break both legs"! that does not make anyone feel better.
on the side of those who say, that, i think they are trying to make a positive point but do not realize that this does not make us feel better about the alopecia either. sometimes it is said out of awkwardness and also, it may be hard to know the different levels of pain, embarrassment, and grieving that we all have experienced because of alopecia. it IS a loss, and it's not so much about losing the hair, it is losing what we envisioned would just be a part of our lives.....having hair! maybe we could all start saying how we feel. instead of going silent, or getting upset, maybe each of us should always say.....you know.....you are so right and i always count my blessings. however, it was difficult for me and still is. i guess i just needed to vent and be heard. just a thought........good luck stef and keep your chin up. i am on my 31st year of alopecia, and although it never may go away, it does get better. it's all in our minds. take time.....and stay supported by the rest of us "alopecians"........xx
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Permalink Reply by Lynda Hykin on
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I found the easiest way to respond to this is to offer to pay for them to shave their head - for the rest of their life. Seems to become a little more important after that. (for those that don't 'get it', I know it's their issue, not mine)
I am more and more open about it now that I can look in the mirror and see more than just 'no hair'.
The more I tell people about it, the more comfortable I get telling people about it. I no longer fight the inner fight about it. It is just now the person I am. I wear wigs when I want, don't when I don't want, tell people if I want to or don't tell them.
People 'assume' many things in life. Don't let their assumption about you become your reality.
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I am usually not a vain woman. I had a haed year with a back injury and felt like my body haf failed me. I always had beautiful hair and it made me still feel feminine. I have now lost so much I cannot hide it. I feel guilty for being so depressed about it but until you lose your hair you really do noy realize how much of your identity you put in it. I am blessed to have this site as I have not met anyone who has it and I feel less alone. :) I will pull my head out of my ass eventually.
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