Alopecia World
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Does it ever get easier?
I'm 22 years old, I've had all stages of alopecia since I was 9. I'm completely bald, no body hair, no eyelashes, eyebrows or anything. It's amazing that I'm still standing. I've wanted to give up many times. Growing up with alopecia was horrible. I didn't know how to make friends (still don't). I would go home everyday crying because I want to be normal. I still wake up & wish I could magically be normal. I've tried every treatment possible & I guess I wasn't meant to be normal. I'm in a serious relationship (talks of marriage & moving in) & I'm afraid. I've never allowed anyone to see me without something on my head. Does it ever get easier? I'm tired of worrying what other people think. I'm tired of stares, and questions. I used to want to be a teacher but now I'm afraid of the children asking me questions. Is there anyone who can help me through this? Suggestions?
Replies to This Discussion
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Permalink Reply by Susan Beausang on
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I've had alopecia for 12 years. When I was first diagnosed I went through the emotions you describe above. I would fantasize about having hair and being normal. Acceptance was difficult to come by and kind words often felt very dismissive. I did learn to accept my baldness and it did get easier. It's not that I don't have those feelings from time to time but they are manageable and I can usually dismiss them easily. So - it will get better but find acceptance on your own time schedule and try not to let your alopecia hold you back from any of your dreams.
Susan Beausang
4women.com
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Permalink Reply by Patricia Gerbaud on
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It seems it depends very very much on the person you are, you must first accept yourself as you are and accept that your hair might never grow back especially since you've got absolutely no hair on your body. Maybe a doctor could help or a psychologist. or friends, talking, talking, talking with people who like you as you are and not for your hair. We aren't only hair. I lost mine at the age of 58, last December, at the end of June I went out bald and even if I was a bit worried about what people would think or say as I walked past I did it and was very proud of it. My son doesn't want to see me without anything on, has only seen pics, he told me I looked as if I had cancer, except that many people think I look great. My son again told me people would give me their seat on the tube (subway as you say !) or métro as we call it in Paris, but unfortunately they don't !!!
But I don't know what my reaction would have been if I had lost my hair at your age ..... Yes you can stand and if you found someone who loves you he shouldn't go away because you've no hair and if he does forget about him very quickly, he doesn't deserve you.
Be brave, you can do it !!!!!!!!!
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Permalink Reply by justincase1004 on
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No, it doesn't get easier. It's tough, it will always be tough. It's supposed to get easier, but the truth about anything getting easier is that you're just getting better at it. The sooner you accept some parts of AA or AT the better it will get. If you want to be a teacher, be a teacher. Don't let AA/AT stand in your way. In fact, don't ever let AA/AT ever stop you from doing anything.
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Permalink Reply by Tovah on
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I beg to disagree with this reply.
It does get easier...alot easier. Once you get to the point of realizing that EVERYONE has something they are dealing with, you will be able to move on. That doesn't mean that I think you should give up on getting your hair back. You're only 22 and I think you would need to know that you gave it a good, honest try.
My hair started to thin, I believe in Junior High School. I knew nothing about alopecia. Perhaps if I had been able to get someone to help me, I wouldn't have lost too much.
"It's NOT JUST HAIR". Keepy trying to find a cure but in the meantime, don't let life pass you by.
You don't want to be 30 years old having stayed in your house all these years.
All nmty best,
Tovah
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Permalink Reply by Mary on
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My answer is YES! It does get easier. When I went AU in 2008, I thought my life was over. I couldn't imagine ever going out in public without a wig - but I quickly found out I couldn't stand wigs! I took "baby steps" to being bald in public, and within about a year it became much easier. Now, it's NORMAL for me. I don't even think about it....if I get warm, my scarf or hat comes off. It's just like wearing a jacket - you wouldn't leave a jacket on if you're hot, right? Here's a recent illustration of where I am today - watch what happens at 1:04. And remember, I couldn't have imagined doing this 6 years ago! http://www.youtube.com/watch?v=5rAZnkjKI4A
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Permalink Reply by Bk on
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It does get better...when you choose for it to. Life is all about focus and what you choose to focus on is what you get. So when you focus on fear and worry and the mythical state of being normal, that's what you get...Fear, Worry, and the feeling of not being normal.
I too am completely bald, no eyelashes/brows. I found my strength when I stopped wearing a wig, because for me, I felt inauthentic. Its not always easy. I do get stares and questions and some days I'm just not into explaining to someone that I don't have cancer, but these days are not the norm. Most days, I am surrounded by wonderful people that couldn't care less about the amount of hair I don't have. Its just not my focus anymore. I choose to focus on the good caring people that are in this world and I know that I am beautiful. I know that I am capable. I know that I am not my hair.There are people that can help you through this. A good therapist can listen to your fears and worries and help you cope with what you perceive to be your limitations. They're only your perceptions.
Choose to focus on something other than your hair. Life is exhausting otherwise.
Put your big girl panties on and get living.
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It does it does. I have had it for many years now and I have learned how to live with it, in fact I don't even think of it anymore as I used to
days and days pass by and I never give it a thought
what helps is the great wigs that you can buy now, lace top, silk top, monofilament ..
my lace top + monofilament does the job perfectly, I totally forget I have miss hair in my head :)
I do my make up every day, work in a busy office, no one has ever said anything,
from time to time I look at Youtube for update on wigs, how to do a better make up etc..
believe you me, there is a life with alopecia and it's a good one
... but I understand.. I was there before.. but you will heal, you'll see
all love
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Sorry it doesn't get easier, you just learn to accept it. Everybody's got something, hopefully this is all you get. I can't believe you haven't let the person you plan to spend the rest of your life with, not see you a la naturelle. If he can't accept you for something you have no control over, he doesn't deserve you. You're not "not normal", you're you. As far as becoming a teacher, I think it would be the best thing for you. You'd be able to talk to the kids and answer their questions truthfully. There are a lot of children who have this too. What a gift to have a teacher who gets to help someone who may be going through the same thing. Be strong, you'll get through this. I read a saying once and it gets me through the bad days. "God made so many perfect heads, the rest he put hair on".
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I'd like to add that the ONLY way it will become less "strange" to see a bald woman in public is for there to BE more bald women in public! Yes, I know that means it's going to be uncomfortable for those women who do it first. But, it's a genuine case of us having the ability to change perceptions simply by being "out". I know it's not for everyone, and I am totally supportive of women who prefer to wear wigs. But, I really believe this is an issue of personal freedom and equality and I look forward to the day when women can feel as free to go out in public bald as men do.
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I had to answer your question because, yes, it does get easier. I too have alopecia universals in addition to vitiligo (pigment loss in the skin) and I can really relate to what you are saying. I lost all of my hair at 25, so never had to grow up with total hair loss (although I did have spots which came and went in childhood). I'm sure that must have been hard for you. Please don't let fear rule your life! I made that mistake so I speak from experience. I was a teacher and kids would frequently make fun of me. The hardest days of the year were the first days of a new semester when I'd face all new students. For a long time, I was like you- afraid of intimacy and afraid to let people see me without a wig, even my husband. I changed my life style- avoided activities where I'd get hot or sweaty, swimming... well anything where the wig "got in the way" (and in my opinion back then, that was a lot of activities), I even had a wig that I slept in, which would ruin the wig, of course. It took me many years to learn that honesty gives you strength and power whereas fear robs you of both. I was a slow learner- please don't make that mistake. I remember the day very clearly when I changed. I was covering a class for another teacher who was absent and one boy in the back called me "baldy". Instead of ignoring the remark (and crying later) I talked to him. I told him that, yes, I was bald. I explained alopecia. I asked him if there wasn't some part of his appearance that he wished were different (didn't require him to answer) but then asked him if he would enjoy being teased about it. We had an honest discussion out in the hallway, and you know, I felt strong! Empowered! And after the class was over, the boy came to me to apologize. I never looked back. I still wear a wig but I don't "hide" anymore. I have shown my grandchildren that their nana has a wig and doesn't have hair. They were curious as to why but that was the last time they have asked. They just accept me and love me. I am 67 now... and I wasted far too many years in fear. You are more than your alopecia. Trust the people who love you, teach the people who tease you, and above all, be proud and have fun.
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I totally understand how you feel, im the same as far as having no hair at all, no body hair, eyelashes or eyebrows, my hair fell out after the death of my father, I was 40 at the time, In Scotland there is a treatment called DCP which i had and my hair did grow back with this, however after 7 years i lost it all again, only last week i realised my hair and eyebrows are growing back with no treatment at all, i personally do think it gets easier but with you having it so young it must have been traumatic for you especially having to go through school, as kids can be cruel at times, your partner obviously loves you for the lovely person that you are, I met my now husband when i had no hair and would never dream of letting him see me bald, but with time i now sit with him with nothing on my head, it is a horrible condition, and very very hard to accept but i really think with time it does get easier, and if you can learn to live with it and relax a bit you never know your hair may grow back, i really wish you all the luck in the world..xx
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Permalink Reply by Glenda Folkersen Stroh on
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I don't understand your pain and frustration as I was older when I experienced alopecia totalis at 35 and two years came back in for eleven prior to losing it again with AU. I hope that I can say something to you that reaches down deep and can help you and spare you additional pain. Life is full of challenges AU just happens to be one of mine (I have many) ha! I think we all have things that make us unique (or different) owning what we have is one step closer to acceptance. Having fun with your wigs, wear different ones...but by no means hide the fact you have alopecia. Wear bandanas at times, there are so many fun ways to wear them. Wear false eyelashes when you wear a "damn"bana for a pop! Don't wear any when you have a wig on. We have so many opportunities for fun different looks, that are all you, me, and so many others. YOU get to make up your rules on what you want to accessorize with. By all means your boyfriend will love your bald head, and such intimacy comes from being vulnerable with the ones we love and truly care about! You have some strong ambitions and you are up for the job of being a teacher! Love your self and others will have a hard time NOT loving you! This doesn't mean that it isn't hard at times and just because a wig looks great...it is still a wig. We don't have Cancer!!!YES!!Be your amazing self, accept what you have been given and know their is such a great community, family of alopecianites (ha)! That are sososososososososos AMAZING! Put our efforts into school, to better yourself and your future family! YOU ARE BEAUTIFUL...believe that :)
Glenda
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