Alopecia World
www.alopeciaworld.com
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
-
Permalink Reply by Lynda Hykin on
-
and we will be with you every step of the way Stefanie!
-
Permalink Reply by Vickibird on
-
Wow. Stefanie, your post brought a lot of thoughts up for me. I lost my hair, then brows, then lashes over two years, aged 41-3. I've read a page of replies and so many points people made chimed with my own experience. I think one thing that helped me was thinking 'What would I have said to someone?' and realising that although I'm generally seen as a kind person, I'd have had very little idea what would help to hear without living through the experience myself. Because of how I am, I'd probably have said something dumb because I had little idea of how to just hold someone's pain: I'd be looking to find a way to fix them. The amount of people who've suggested 'cures' I've OBVIOUSLY already researched!!! I mean, I went bald for heaven's sake! Like I didn't Google it!!!??? Please! My feelings of loss of identity, age, prettiness and 'normality' were a whirlwind that brought me very low. But I have to agree with others here that there's an awful lot of ignorance out there about these conditions, and once people know, they are mostly quite wonderful. The little kindnesses and compliments I've had from total strangers has been super-humbling (esp. going back to ' what would I have said to someone'!). The fact is, no-one but us knows how it really impacts. And there are still days when I'm feeling 'less-than' when I get some kind of comfort from looking at some confident, carefree, pretty girl and thinking 'Now. Take off her hair. Now her eyebrows. Now watch her eyelashes fall out, and let's see how she does.' She's not usually looking in better shape than me by this point, and I genuinely don't mean this in a mean way: I've just come a long way, and that scenario
makes me see just how far... This bonkers condition teaches us loads about perceptions and kindness and ignorance: most life-lessons worth the learning are not comfortable to learn. We're a wise bunch in many ways, whether we're struggling or ok with it now. And we're all different, as it should be: our difference from each other and from non-A's is our strength. Acceptance, for me, has been about finding practical ways past that suit me and my life (wigs, brow tattoos, fake lashes etc.) i.e. coping, with allowing myself at the same time to say 'Yeah, it's not life-threatening, but it's life-changing, and I could have done without it - I'm allowed not to love it!' Listen, please don't shut yourself away. This is your life. It's important you should live it, but being kind to yourself and still getting out there is an option. I truly wish you all the best: be brave but grieve when you need to. Vx
-
-
lmao if I had a dime for everytime someone offered me advice on my alopecia I would be rich. I can see your point for sure on thijking of what I would say to someone in my condition. I need to to see it through their eyes.
-
-
Good! Laughing! Me too. I'd be so damn rich you wouldn't dare mail me! Good people say dumb things. Self definitely included! But hopefully less so these days... Maybe one good thing this poxy condition has given me: better skills at dealing with other people's uncomfortble stuff and being more genuinely
compassionate. People just have no idea. Even my best and kindest friends, who've seen the private agony it's put me through, have still said the daftest things or forgotten altogether....It looms so large for us. Course it does. But not for them: why should it? I really wish I could just download the way I now feel into your head, but as I can't, please just have faith that there's peace round the corner for you about this: hang on and don't expect yourself to feel ok about this in the wink of an eye: that's just mean. Time, and forums like this. I really love the USA forums: UK ones not at all: shop around til you hear voices you understand and you'll be ok in time. Promise. x
-
Permalink Reply by Gale Moorman on
-
Well people should realize that coming out with anything takes courage and you should get a gold badge for it. They should at least be sympathetic and caring and if they aren't...well at least you came out, you should feel relieved and move on. I've had alopecia for over 30 years and a year or so just came out to one of my sons who works with me in a self-employed business. The other 2 sons are really involved in their lives and I feel it's no need for them to know because now no one is asking or cares. how long have you had alopecia? With time the adjustment will get less...that's for sure.
-
Permalink Reply by Debbi Fuller on
-
Hi Stefanie,
It does take courage in the beginning, but the more people you tell, the better you will feel about sharing it. I can honestly say that in 22 years, I have NEVER lost a friend or been rejected by anyone when I've told them that I have no hair. If I HAD lost one, I would know that they were not a friend to begin with. I agree with the women who said that they feel younger now than they would with their own hair. I do too. My hair is the color I want and much healthier and prettier than I could 'grow' at my age! YOU are not YOUR HAIR. You are an individual with skills and attributes that are unique to you. You have to learn to value yourself as a 'one of a kind'. Anyone who does not see who you are beyond your obvious physical attributes is not a very aware person and therefor, not worthy of your concern. Decide to live life to the fullest - decide to be happy. YOU are the one in control.
-
-
I feel your pain and understand what you are going through. I myself have been having a hard time with having alopecia. My family only knows and a couple of friends. I have a little boy that has to be driven to school and picked up everyday. All the moms are chatting and the wind blows and I'm afraid someone is going to notice my bald spots behind my ears. I wear cute caps a lot and tell everyone I love them. Thank god my face actually looks cute in them. I love this site because it has great experiences of other people who have our condition. It is really helpful. I just read all of your responses and they were so uplifting. This is a great site. Feel betterI know what you feel like. By the way I just ordered my first wig today.
-
-
I deeply empathize with you because I know how hurtful it is to have someone say this. Of all people, it was my mother who said to me, "Well, you won't die from it!" Even though I am an adult and my mother hasn't always had the best track record of being supportive, I was still shocked by her reaction. She immediately launched into a story about a friend with cancer. I haven't told any other family members since then. I have a few close friends who know, mostly coworkers who work in the medical setting and understand the clinical side of this condition. But you are so right; it is so hard to work up the courage to share this condition with others, and so devastating when they are thoughtless in their response. Thanks for sharing, and know this: we are not ugly! I have begun to work very hard at exercise that I enjoy so that I have something that I can control about my body. I wish you comfort and joy.
-
Permalink Reply by Dorothy on
-
I have had similar reactions and worse, even had one person tell me I had a form of AIDS how they went there is beyond me. I have told people who I thought were my friends and they suddenly were not my friends. I have decided not to tell most people, since my husband passed away almost 3 yrs ago I imagine I will be alone the rest of my life since I am tired of rejection due to AU. Many on this site seemed to have had better luck with people than I have over the last 40 + years. I guess is did not help that my husband was in the Air Force and we moved around, new faces, new people to tell, new rejection every few years. I will tell you if you can help it, do not be like me and seclude yourself, find those you can trust and hold them close, life will be so much better in the end.
-
-
I had a friend take a pic when i was facing away from her and showed other "friends". I felt like I was a joke.
-
Permalink Reply by Jean on
-
I agree Stefanie. When I decided to open up about it, I had gone from a month of wearing hats everyday to wearing wigs for 5 months. I work in a middle school and when I regrew some of my hair and the weather was getting warmer, I decided I wanted to stop wearing the wigs. So, I emailed my co-workers asking for their support and things they could say to students if they questioned or commented on my hair. I was surprised how many people did not know I was bald! I thought I told everyone! Some kids did ask about it. They were very cool with it. One kid told me it was a cool look. The thing that got me though, was an adult telling my 18 year old daughter she was sorry to hear that I had cancer. She just made an assumption. Well meaning, but very misplaced. She never should have said that!
Let me know if you ever need to unload. I'm a great listener (reader)!
-
Permalink Reply by Pam D. on
-
I "came out" on Facebook! I knew I would look different and didn't want my friends to think I was ill. AA has only changed how I look; it hasn't changed who I am. I guess we're all different in how we feel about this condition and how we handle it. I accepted it early on and changed nothing in how I live my life.
- ‹ Previous
- 1
- 2
- 3
- 4
- Next ›
© 2024 Created by Alopecia World.
Powered by
