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 julie on
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My heart broke as I read this post. Let me say that I think you do need someone to talk to, a therapist perhaps. Alopecia has taken a huge amount of our self-esteem and self-worth. It already has your hair! Why give it more? I have AU and will tell you honestly I can accept & love myself, however, I still would love my hair! With that said, I consider myself a normal person (whatever that means). I have 2 daughters, an ex-husband who is my friend, I've dated and had a serious relationship since my divorce that I ended. I have friends, and own a successful business. You are so young! Everything is ahead of you! You can be a teacher! I do wear a wig that I love when I'm outside of my home, but that is my choice. See if there might be an alopecia support group in your area; find a good therapist; finish school; if you don't have a wig you feel sassy and beautiful in, get one. Tell your boyfriend how sad your alopecia makes you feel and ask him for his support. I'm assuming he knows you have alopecia--let your guard down with him as it sounds like a serious relationship. I wish I could give you a big hug and tell you it will get easier--instead I will send you warm feelings of love ad ask you: WHAT ARE YOU WILLING TO DO YOURSELF TO MAKE YOUR JOURNEY WITH ALOPECIA EASIER? With love in my heart--Julie
Also-here are other things that have helped me deal with my 15 year journey with alopecia:
1. website of naaf-just google it
2. sometimes I google 'famous people with alopecia';;;this helps in a weird way : )
3. walking with my fave music
4. I used to see a therapist
5. writing in a journal
6. stop searching for cures--if there is a cure, we'll hear about it!
7. volunteering--you want to teach, I bet there are programs that need volunteers to teach children how to read, math, ect
8. you struggle with making friends--this is a common struggle. Do you have siblings or cousins you can socialize with? Practice!
9. BE GENTLE WITH YOURSELF
10. pedicures/massages/facial...anything you can do once in awhile to remember you are worth it!
11. because you ARE WORTH IT.
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Permalink Reply by Larry on
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It's a very tough question for anyone but yourself. I think that you have had ample time to determine how you will face each day. I have the same condition as you but didn't loose all of my hair until I was 62. Imagine my surprise.....hair today and gone tomorrow. Please take pride in who you are and find the strength from within to move in a positive direction. You life will only improve if you make it happen yourself and love yourself. Good friends and family can be a big help.
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Permalink Reply by Cinder B. Rand on
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Dear Kelsey I have alopecia all over as you do. I have had it for 6.5 years. Does it get easier? In some ways I think yes and then there are days when I think we have our moments. I do think we all wish that we could magically transform back to having hair, lashes, eyebrows and the whole deal. There are days when I completely embrace not having hair and I truly think it is beautiful. Most of my friends (close ones) at this point in time, see me without hair at my home. Most are use to it and they tell me that they like how it looks. I think that there is a part of us that always worries that someone might say something incorrrectly, poke fun of us, be cruel but…with that said, it depends how we embrace it. Most people I want to believe are kind and caring. Truth is (we all know) that this can happen to anyone at any time. I always think of my network of friends and people at Alopecia World. For sure we are not alone, me just writing this to you proves that. I have met a number of people through having this that have grown up with A. Every one I meet has a different story to tell but bottom line we all have it. Just reaching out the way you are just seems like you are a lot stronger then you think you are. I think (I cannot speak for everyone) but I know there are times when I just want to lay down and cry. I feel I am entitled to do that every once in a while. Then it’s over and I am on to living my life (which over all is great!) So become a teacher, get married, go on vacations, make wonderful friends that get who you are and embrace all the amazing things that make you…you! And then write and tell us about it. Peace Cinder
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Hi Kelsey
I was in my 20s when I got aa it felt horrid at first n all I did was cry I felt sick to look at my self.
All I did was work I lived in a city n all my friends n boyfriend at the time wanted to be going out all the time.
I didn't feel confident in my wig thinking it didn't look real and didn't suit me .
I totally changed my life style I sold my house n moved to the country with my 2 dogs n brought a horse so I could have a life with my animals blocking the world out if you like n getting to know my self and like myself.
Knocking around in my jods n boots with wig head bands made me feel happy my confidence has grown over past 10 years just cos I feel happy with my life n do what I love doing spending time with my animals.
3 years ago I met a lovely guy who has a farm and really worried about done scares on his legs from hip replacements ! I never batted an eyelid at this and he never at the sound of me having no hair !
The moral of the story is we have this big problem but itx not a big problem to anyone else so find yourself n always do things that mske you happy
Take care my friend n try to enjoy your life..
I just got a fab wig from freedom wigs in newzealand ordered from uk a few people do them over here. Just ask me if you need more details xxxx
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at first i thought what else can i say that most of the comments have cover most of it... but i do have something more... Don't see the outside of you! Look at that beautiful young women that you are. I have AA since I was 23 and I"m 49 right now, the only ONE thing I do regret was NOT accepting that I had Alopecia. for 21 years i was praying and crying hoping I was normal... Until I found out that I was praying the wrong reasons...so I change my prayer I ask the Lord for strength and acceptance of who I was now. It really works because after a few months of prayers I stared noticing that it really didn't bother me so bad like it use to. But with my prayers I also started to read articles of persons that have really bad skin disorders and I would compare my disease with those other skin disease. That in my situation really help a lot. Because I do have this problem and if i want to I can just wear a Wig...but all of this persons they can avoid skin problem but what is worst is that most of those skin problems hurt "physically" and our disease don't hurt physically i know it hurt emotionally but that we can control it. Because we decide to let hurt or not... Believe me once you decide that you wont let that hurt you. YOU WILL FEEL much BETTER! Also the more you talk to friend & family about it the sooner you will be able to feel better about it... I sure hope i was able to help a little... :-)
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Permalink Reply by Debbi Fuller on
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This is a tough one to answer because the real answer is that it gets easier when you accept it. I don't know how to tell you to do that but that is what has to happen for you to get to a better place. Try talking with some of the women on this site who have accepted it and who are in a happy place. It's not fair for me to tell you anything because I didn't get it until I was 37 and I am a natural ham and outgoing person. It was VERY hard for me in the beginning, but it got easier faster because worse things happened that helped me get it in perspective and I realized that anyone who didn't accept me (none so far), weren't worth my time anyway. Reach out to people who are positive. Don't focus on it so much, try to live your life in a normal way, try to take baby steps toward being more open. I can promise you that if you can learn to accept it and can be more open and honest with your friends and acquaintances it will get easier and easier because you will see that they like you for YOU. Good Luck.
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Dear Kelsey,
It does get easier. I, like you, lost my hair at a young age. I have learned that no one cares as much about it than you do. If you tell people you wear a wig, or have alopecia, you will be surprised at their reaction. I actually have found it liberating to admit that I wear a wig. I don't go around without it, but if someone asks me, I tell them. We talk about it, then move on to another topic. I have been married for 15 years and have 3 children. I don't have all the answers, sometimes I'm embarrassed by my baldness, but I don't dwell on it. There are worse things in life you could have. Keep reminding yourself of that, or go volunteer with people with disabilities. Sometimes that can put you in perspective. And it's okay to feel sorry for yourself, but not for too long. Live your life. Best of luck to you!
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Hey Kelsey! My name is Gabrielle Robinson and I have grown up in a very similar way to you. I was diagnosed with alopecia when I was two years old and lost all of my hair to alopecia universalis when I was nine. I'm 23 now and I still struggle with dealing with my hair loss. I used to always wear a wig, even to bed, when I was with someone that I was dating. About 2 and a half years ago I met an amazing guy who I talked to about my alopecia (the first guy I dated that I actually told I had alopecia before we became boyfriend and girlfriend). He was extremely supportive of me, and to be honest it was VERY hard for me to not wear my wig around him for the first time and feel that I was attractive and feel that he would still think that I was sexy.
When I took my wig off around him for the first time and showed him my bald head, he kissed it and told me that he thought I was insanely beautiful. If the person that you are with loves you for who you are, then hair is not even something that is going to be on their mind. Most people don't look at a girl that they find attractive and think "Man she has got some nice hair!". Instead they notice other qualities first and after a person gets to know you, your personality is the most important thing to them.
As I said before I still struggle with dealing with my alopecia. I still feel very comfortable wearing my wig, because yes, you don't get asked a bunch of questions by people or get stared at. However, and this is something that I am just now working on, if we can be comfortable with ourselves and FOCUS on all of the amazing qualities that we do have,such as a beautiful smile, pretty eyes, intelligence, or an athletic body, then (while it is still hard) we can come to respect ourselves for what we do have.
It can be frustrating to answer people's questions and it can be extremely challenging to believe that you are an amazing person without hair. BUT it CAN be done. Your significant other see so many great qualities in you, focus on those qualities. I know I'm working on doing that as well :)
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Permalink Reply by buddhaz on
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hi kelsey, does ur partner know of ur condition and seen u without something on your head? and accept u? if yes, your golden... dont let your own judgement scare u out of a good situation... and i find the easiest way to get things better is to stop caring about it, when i did that all my hair grew back..... well i got one patch now that started a few months ago but thats easily reversable.. i hope LOL... anyways, feel free to email me buddhaz21@yahoo.com... my aa started when i was 14 so i spent about ten years suffering from it so i can share experience and thoughts wit u.
ROn
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Hi
I'm 32 and my hair started thinning when I was about 17 after a bout of anorexia. I also have a family history of hair loss. My mother is almost completely bald and has worn wigs for the last several years. In the last 2-3 years my heath as well as my hair have taken a downturn and it got to the point where what hair I had left made me feel worse about myself. I finally took the plunge one night a couple of months ago and grabbed a pair of scissors and chopped it off as quickly as I could. Later my husband shaved my head for me and I've been wearing wigs now when I leave the house. I have to say, it feels liberating to not have to see the lack of hair anymore, now I just see me.
I do know it feels awkward when you look in the mirror and there's nothing where we're programmed to see something. Since my brows were basically non existent as well, I went about 4 months ago and had permanent makeup applied. I am lucky enough for now to still have my lashes, but I absolutely love having my new brows. I felt as if when I got out of the shower or woke up without make up that I looked like an alien or something and I just couldn't get used to seeing myself that way. Now, I feel "normal" for myself. Everyday, when I'm not planning on leaving the house and wearing full makeup, I just make up my eyes, put on some pretty little earrings and lip gloss and I totally feel feminine and more myself than I did when I had hair that was thin and ugly. When I go out of the house, I put on my wigs and have the hair I dreamed of. I get to decide what style, color or cut I want to wear. I haven't gotten enough courage to wear different wigs everyday so that neighbors, friends and distant family know I'm wearing one, but I'll get there eventually.
I think the most important thing to remember is your hair doesn't define who you are. But, if you're not comfortable letting other people see you without wigs, makeup, whatever, do what makes you feel comfortable. In the case of your significant other, my thought would be the sooner the better if it's serious. The longer you put it off, the more apprehension you'll create within yourself. If he knows you don't have hair, it will be a little strange looking to him at first, but just like when you have hair and change the style, people get programmed to accept the new "normal" version. Take a deep breath, and go for it. If he loves you it won't make any difference to him, even though it might make all the difference to you. You have to think about it from the reverse perspective, would you love him if he went bald, lost an arm, leg or was crippled? You have to trust him if he's proven he's trustworthy and give him the chance to show you.
As for your dream of teaching. Go for it! If you're not comfortable letting people know, cover it up and continue on. One day you might be able to change a child's life that's dealing with the same things you had to go through. What could be a better gift than to take a painful experience you've gone through and use it for helping other people. That's an amazing opportunity.
Truly all the BEST wishes!
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Permalink Reply by ienneleigh on
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Hi Kelsey, Though I don't have alopecia but I can feel your pain because my daughter has had alopecia since she was 2 yrs old. She lost her hair completely at 16 and was stripped of everything for a young girl. No dates, no prom. It was a very difficult time in our family back then. There are so many things I can share with you but it would be long and involved like a book. I have sent you a friend request because I want to provide you with information about how to get in touch with my daughter through facebook. There is a support group in our area in Los Angeles, headed by Dr. Carolyn Goh (who also has AA) from UCLA. Dr. Goh has created a website for her LA group also, and she can be reached through the NAAF.org website (NATIONAL ALOPECIAL AREATA FOUNDATION). I really encourage you to seek support through them so that you will gain the strength and support to survive this very emotional and traumatic experience. For us, it was like suffering a death in the family. People say it's only cosmetic, i.e, appearance, but they don't understand. It really hurt to the core... We watched my daughter die emotionally and saw her undergo a re-birth, a metamorphosis, and re-create herself. About 6 months after complete hair loss, she decided to uncover herself, not hide her baldness, and go 100% all the time without any coverage. I'm not saying that you and others with AA should do the same. Different people handle things differently. I just want you to know that you're not alone in this. There were a lot of pain, excruciating, gripping pain and tears, a lot of anger, a lot of turmoil, but our prayers were answered through our FAITH and LOVE for each other. Be strong. You will find that the stages are akin to the grieving process, but once you have overcome all that, you will be a stronger, happier, more introspective and more beautiful human being. NEVER GIVE UP YOUR DREAMS, of being a teacher. My daughter is now living her dreams and on the way to reaching her academic goals. She's 19 now and so you both have a lot in common. Love yourself first and know that there are others who also love you.
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It does gets easier. As I slowly started to loose my hair I also began to feel less confident. I would put on a brave face in front of everybody but when I was alone I used to cry myself to sleep every night. Once I accepted my new me, a new reality that I wasn't able to control, I started to feel better. I'm single and I can't deny that AU makes dating and meeting new people more difficult. Although I wear my wigs most of the time when I go out, I tell people from the start because it gets more difficult after a while. If no one talks about it alopecia becomes "the elephant in the room". Count your blessings! I have to be grateful for the support of my good friends and family. I feel normal because I am. We just have a condition like anybody could. You already have more friends that you think you can count on all of us here for support as we are going through the same process.
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