Replies to This Discussion

Permalink Reply by Taylor Walworth on April 6, 2010 at 10:06pm

Hi Ashley. I know how you feel about not wanting people to pity you. I feel the same way and i just can't stand trying to explain the situation when people just don't understand anyway. I just hate the whole "oh... i'm sorry.." awkward moment. I mean seriously, what are you sorry for? It's not like you pulled my hair out and tossed it around the room! That's mainly the only reason I wear a wig, so I dont have to explain it to everyone else. That's also a reason why I have problems meeting new people because then i'm back to the explaining and the awkward "sorry"s.

Except for this one day in school we had a meeting where only 200 people from our school could attend. It was called "Be The Change" and i guess these people that hold it travel around the U.S. At first we did games and then we got into little groups of four to share our experiences. I just listened to everyone else cry about lost famiyl members and such and didnt say a word because i was afraid. then at the end we could get up in front of the 200+ people and say whatever we wanted. most people only shared what they thought of the meeting. but i just had a feeling i needed to tell everyone and I knew that if i didnt i would regret it later. So i got up in front of them all and said that I have alopecia. The host made me say one thing about myself and i said that I was beautiful. Everyone clapped, stood, hugged me and told me how much they respect my courage. It was great because my alopecia felt like a gift.

Sorry my story is so long but i really hope this helped. Sometimes telling people can make you a stronger person in the end because you wont need to hide it anymore.

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Permalink Reply by Cheryl, Co-founder on April 6, 2010 at 11:57pm

Hi Ashley, I do not know what your friends are like, but real friends will most likely see you as courageous. In my case and in most cases that I have seen, the "revealing" takes a few uncomfortable minutes and then a sense of relief comes over you, knowing that you no longer have to hide, make up stories or miss events because of fear. Hold your head up high, take control of the conversation and real friends should not pity you. I can tell by your blog that you truly feel that living life hiding is not the solution for you and that you have a need to break free.

There was also another discussion on how to tell friends and family about your alopecia that you may also want to read.

As far as your fiance, I can tell you that in no way do I believe or do my friends and family believe that rj can do better or that I can for that matter. In fact I believe and most believe that my husband is more of a man than most. He is strong enough to not to care what others think, he is capable of seeing beauty in women that is not always typical and he is strong enough to stand by my side regardless of what is going on around us. Showing me, that we can face many adversities that may come our way. Try to take your eyes off of what others are going to think about your relationship and instead concentrate on building a relationship that can withstand life’s ups and down.

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Permalink Reply by Rose Marie' on April 7, 2010 at 2:54am

Hi

I think the secret of 'alopecia' can become a terrible burden and it is often such a relief to be free of it. While freeing yourself don't forget to understand that you are all your ever were and can be all you ever want to be. The worries that you have had about people knowing are understandable but I would suggest they are also the least of the issues you may be currently dealing with. This is not really about others reactions but more about how you choose to deal with them. You can't control what others think and do, only how you react to their behaviour. (In my personal case there has been very little bad behaviour towards my daughters alopecia - so be prepared to be loved for just being you :)) I think one of the most important things you may have to come to terms with is what you actually think about yourself and your hairloss and what that means to you and possibly what fears you had which kept you from telling your friends.

It may help to make a list of what your worst fears are and think how you may handle those in a way where you feel comfortable. Then make a list of what you hope to happen (the best scenarios) and work out ways where you can help others react in the way that you need. I think you will find this experience empowering and I wish you all the best.

Take care and let us know how you get along.

Rosy

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Permalink Reply by Pat Latina on April 7, 2010 at 6:34am

Hi Ashley, I want to encourage you to free yourself. Easy? NO WAY, but you'll see it's liberating. Stop thinking about what they would say and think about you telling them. Think more about you - give yourself a big (((hug))) and look at yourself and tell the image how beautiful you are - look beyond the reflection but look deep inside where you really are who you are. We are a spirit being living in a body - allow the spirit to rise up inside and take over what you might appear like to others. Love yourself as your sister and fiance do, I'm sure you have plenty of people that love you and will understand and not feel sorry for you, that is the worst. When I first told my friend(s) I was feeling everything you are describing. Come to find out they all were wondering what was going on - cause you know they are not blind. In there mind they thought I had something else, when I told them they complimented me on how beautiful I always look (my hair - wigs) and said that they were just waiting on me. They asked alot of questions about AA and stuff it was great. I still haven't told everyone but little steps. Maybe you should tell 1-2 of the closes friends first to get you going, I know that once you do, it will be easier everytime. We are here for you - Liberate yourself and let us all know how it goes. My prayers are with you. One more thing - if they are true friends - there will be no pity and you'll see the feeling is undescribable 'FREEDOM'. Also, I love this Alopecia World friends - the support here has helped me tremendously - Thank you Cheryl for creating this site.

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Permalink Reply by Jenna4 on April 7, 2010 at 9:14am

Hi Ashley...I can totally relate to what you said about being tired of hiding it. I feel like I am living two separate lives, one at work with the wig and the other at home - being myself. I feel so much better being myself at home with just a bandana on. But I am not ready to take the next necessary step and be 100% myself, free to everyone. That is my own fault, but I'm not there yet.

Be kind to yourself, don't beat yourself up. It sounds from your post that you are ready to take the next necessary step to come out to your friends. Take a deep breath and DO IT! You are ready, sometimes you just have to take that leap of faith. You will feel so much better once you do. Then, you can decide what you need to to about your hair or wig. Possibly wear hats until you can buy another wig? Can you take the wig to get repaired?

You can't stop living and enjoying life just because of your lack of hair. There is no shame in having alopecia, you have no control over it...but you can control what you do about it. Be proud of the beautiful joyful person you are on the inside.

True friends will stand by your side during your toughest times...if they don't then they aren't worth keeping.

{{HUGS}} and good luck!!

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Permalink Reply by Ashley Garrett on April 7, 2010 at 1:30pm

Thanks everyone for all the advice!! when i posted this i was having a very bad day!!!!! i guess everyone has those kind of day ever once in a while lol. you all have REALLY helped me get through this and i am so grateful to have found such wonderful people!!!!! im thinking about telling them tomorrow so i will let everyone know how it goes... im excited!! i know this sounds awful but a little part of me wants for them to be so disgusted with me that they never want to see or talk to me again... i just think that would be easier then having to see them everyday.... gosh that really is awful!! has anyone else every felt this way before...im sure i will go great and i will get lots of lovin :)

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Permalink Reply by Kari M on April 7, 2010 at 4:34pm

I can tell you this. It gets better. It gets easier.

When I first lost my hair, and stopped the prednisone, I made sure that all my friends, family, co-workers and clients knew what was going on. I let them know that I was moving to a wig, so they wouldn't jump to any conclusions. Several even seriously offered to shave their own heads! I wore a wig for 2 years and I was miserable . . . it felt like a costume I was wearing to make everyone else around me more comfortable.

I made the decision over a decade ago to switch to hats and scarves . . . so much more comfortable and I get the added bonus of daily accessorization (is that even a word?). Once again, I had "the talk" with all my friends, clients, etc, reminding them that I had be wearing a wig and that I was no longer going to do so.

There was nothing but support (and, I think, relief that I had let them know what was going on).

It was not the easiest thing I had ever done in my life, but now I don't even think twice about it when someone says something or asks.

I spent so much time and effort in my life trying to fit in . . . and I am so much happier without the costumes.

Keep in mind: your friends are your friends because of what is inside, not because of how beautiful your hair is. Your fiance wants to spend the rest of his life with YOU, not your hair.

Hopefully that wasn't too preachy . . . it took me a long time to feel comfortable with my new bald self-image. It doesn't happen overnite. You are so fortunate to have the support of this site . . . there was nothing like this when I started my journey 15 years ago.

Hang in there . . . let me know if I can help in any way!!!

Kari

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Permalink Reply by Petra on April 7, 2010 at 4:42pm

Hi Ashley, I think one of the hardest things for me is to let people know - and then when they do I feel so much better. Yet, I go through the same feelings of insecurity every single time. You sound like you have friends that care about you, that is not going to change when they find out you have alopecia. You might even be surprised that most of them already know but didn't want to ask you about it. Let us know how everything went.
(((((HUGS)))))))

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Permalink Reply by Dominique Cleopatra on April 7, 2010 at 6:03pm

Recently a "deep dark family secret" came out and *gasp* nothing happened. Consider the possibility that if you let the proverbial cat out of the bag-- or it claws its way out that the sky won't fall at all, not even a chicken little!

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Permalink Reply by Clara S. on April 8, 2010 at 5:43am

Hi Ashley, I was like you for years and then recently I've just went around telling my friends about it and now wear different wigs all the time. I think the key is to be confident of yourself and how you present it. If you are confident and say it in a way that doesn't warrant pity, then I doubt you will get the pity stares etc. It's not always easy - the first time, I felt rather awkward but it was all in my head. Now, i'm getting better at just sharing and being open and it does get easier over time. I'm just freely sharing it with people that I hang out the most with.

I have not encountered pity from my friends, just a lot of support and they treat me no differently from before. It's really liberating though to be open with your close friends and true friends will understand and stick by you. By the way, I don't think your friends will think your fiance can do better than you! Your hair doesn't determine your self-worth and like I said, if you're feeling good about yourself, than everything else will fall into place. My friends all think my boyfriend is wonderful and so sweet to me and they are very happy for me.

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Permalink Reply by Christine on April 8, 2010 at 9:04pm

Hi Ashley,
This is such a tough spot, I don't know if I did the best thing or not, but I have told everyone, and I mean everyone, The last time I had a giant loss, I bought a wig, not a lace top, but just a expensive fake, and try as I might it just looked like a wig so much to me, I could not stand it, I know there are better wigs out there, and if the time ever comes where I can't hide it anymore, I'll look into something better, now, that being said, this is probably why I just couldn't take not telling, I felt like there was no way I would be fooling anyone, I speak openly about my AA, not just friends, but coworkers, as well, my thinking behind this is that while I'm getting by now, if I go AT, AU, or just past the point of being able to cover, than they will know that it's just my AA, a disease, I have that may progress or go away, and we never know. Like I said, I don't know if I would have felt better if noone knew, and I was able to fool people with a great wig, that may have been best, but I just feel so self-concious, it's awful, today was so windy, and I don't have much hair at the back underside, so I feel so vulnerable, the wind just doesn't mess up my hair anymore, it messes me up...darn. I don't want pity either, but what I do want is clear understanding, this is difficult, and in the end I think you will be glad you told your friends....good luck, I hope you feel better by the time you read this.

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Permalink Reply by Amber W. on April 8, 2010 at 9:35pm

Hi, Ashley!

I can understand what you're going through. I wear wigs whenever I'm outside of my house, or even when I have new acquaintances over. I got tired of trying to keep my wig-wearing a secret, though. I like to change my wig style/color quite often, and so it always seemed to spark questions like "Did you color your hair?" "Did you get extensions?" "Did you cut your hair?" Etc. I decided that instead of trying to make them think that's what I had done, I just told them ever so matter-of-factly - and with a smile on my face - that "I actually have a condition where my hair falls out, so I wear wigs!" They're always taken aback, but I feel better about being open about it, and then I don't have to wonder if they think my hair is real or not. They know the truth. I think that because I am open and honest about it, they don't look at me like they should feel sorry for me. Instead, I think it gives off the impression that I'm cool with my situation, even if at times I'm feeling a little down-in-the-dumps about it. I hope this helps. If you ever need someone to talk to, I'm here for you!

- Amber

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