Alopecia World
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New and Frustrated
Hi everyone,
I just joined the site and I've literally never talked about my alopecia to anyone before, so this is really scary for me. I've had alopecia areata since I was very young, I think my mom noticed my first spots around 3 years old. I wore a wig in kindergarten, but since then, my hair has grown in completely. I have had a few spots here and there over the years, but I've always been able to hide them and they've always grown back. Not even my boyfriend or closest friends know I have this and I'm so so scared for them to find out. I'm now a freshman in college, and my hair has started to fall out very very rapidly. Ive lost about 40 percent of my hair, and can barely hide it anymore. I know I'm probably going to go back to wearing a wig, but I really just can't except it or deal with it. I'm afraid my boyfriend will see me differently and not want me anymore and that my friends will be scared around me. I just wanted to actually write something and say this (kind of) out loud because I really have no one to talk to about it. Id be willing to chat with anyone, but it's also a relief just to type this out and accept that this is real and happening to me and I need to learn how to cope in a healthy way. If anyone wants to share how they told their friends or significant other about their alopecia, I'd really love to hear about it!
-Kaleigh
Replies to This Discussion
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Permalink Reply by Robyn on
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Hi Kaleigh
I posted on Facebook to all my friends (except acquaintances ) telling them what Alopecia Universalis is and that I now wear scarves and wigs. Everyone was most supportive. I also called my boss and asked her to tell my immediate colleagues. My hairloss went from a patch to Universalis in 8 weeks so there was no time to eff around. Good luck xx
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Permalink Reply by Andrea on
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Hi Kaleigh14,
I have hair loss too, and I recently started a hair loss support group that offers advice and support for wearing wigs and toppers and making them look natural, but this group of amazing women struggle with all different forms of hair loss and offer so much support. If you'd like to join us, you are welcome to. It's a closed / private group on Facebook. www.Facebook.com/groups/wigandtopperhelp/
I'm sorry that you're going through this and I hope you have a lovely evening... Hugs!!!
Andrea
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Kaleigh,
I had a massive amount of thick curly hair that defined me. I was diagnosed with lichen planopilarus (a scarring alopecia - the hair does not grow back) in 2008 and was devastated. It took me a really long time to adjust and realize that my hair really didn't define me and that no one who loved me before loves me less now. Have faith that those who love and care about you will show compassion. If they don't, they don't deserve to be in your life. It's never easy but I promise it will get easier. Be gentle on yourself.
Bev
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Permalink Reply by Melissa 74 on
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Hi Kaleigh -
I was 13 when I got my first spot. By 14 my hair was so patchy and awful there was no hiding it. I didn't talk much about it but everyone in school knew something was up. The summer going in to high school I got my first wig and never talked about alopecia except to my close friends and my boyfriend. He was so amazing 13 year old young man who didn't bat an eye and stayed my boyfriend until he moved out of state 4 years later.
It was always hard telling boyfriends (not that I had a lot but still hard every time) I always hymed and hawed until I could find the words. When I told my now husband I actually took his hand put it my lap and told him I used to be a man. I figured following up with just kidding I'm half bald would be much easier to handle.
I never had a bad reaction from anyone. No one teased and no one lost interest.
Once I became pregnant at 30, I went from a patchy scalp to every hair on my body falling out. Now totally hairless at 43, I embrace it. I am who I am I don't care who knows and if they don't like it, their loss.
It's been a process and I think both my age and 30 years in have gotten me to where I am.
You will also one day get passed your fears. But for now they are there and they are real. Remeber you are beautiful, you are strong, and you define who you are.
Much love to you and the best of luck to you in your future.
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My hair fell out very rapidly right when I was hitting puberty at 14....definitely one of the roughest times for this to happen. It took me until I was 20 before I told anyone - then I started just telling my roommates within a few days of becoming roommates. Same with new friendships. It was a HUGE weight off my shoulders to just be able to tell them early on. I'm a few years older than you and it's still hard to be really open about it on a general scale, but for those closest to you, it's definitely best. message me anytime or find me on FB if you want to talk!
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I lost all my hair when i was 12 to 13, at first i tried really hard to not care about it but by the age of 20 i understood that it's simply not possible. It's too much stress, strangers and even friends will still have that automatic rejection, you can always see it in people's eyes, even if they are not hostile, it's survival mechanism: when they see someone who is apparently sick, they try to stay away. I wanted to fit in and be normal, instead, i always attracted too much attention and felt that silent rejection, i can't blame other people for that, they simply can't control it. I tried wigs, but they are too hot and uncomfortable, can't bear them. So i decided that life in isolation is the best choice.
Internet can handle my social needs, if people can't see me, they act normal.
If i was born 20 years earlier with the same problem, i probably would have killed myself.
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My girlfriend in college had alopecia. Her hair thinned significantly and i saw a couple of spots. I tried bringing it up to her twice, but she was defensive about it and very sensitive. I just never brought it up again. I always thought acting like it was nothing was the kindest thing to do, and to be honest, i was so ignorant thought she had some kind of female pattern baldness. My scariest thought was id have a receding haired girlfriend.
If you've lost 40%of your hair, your boyfriend has noticed unless hes a conplete dummy. When you're comfortable enough, share it with him so he can support you. Also ao he can know what you have instead of guessing. Contageous, cancer and serious illness all ran through my head when i was 21. Hopefully hes a good enough guy to prove he's your rock and you two can become immesurably closer from the support he'll give you. Keeping it to yourself will be a little wall you put up...which isn't necessarily a bad thing if hes not the guy to tell or if you're not ready to go through this with someone else. Good luck and stay strong
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Hello sweety
I have had this problem too since I was 45years. Stressed caused this to happen. I use to get shots and they grow back but last year after washing my hair one night most of the remaining hair on my head was in my hands. No way to go to work the next day without letting them all know of problem. It wont grow back so I shaved it all off and feel better in the way I can finally swim in the sea instead of sitting on the sand. Its gone its gone and have to acxept and advance. Pretty soon when my head is tanned I will go out without a wig. Its crazy but I love my head the way its now. And I only go out to special occations as dinner parties and resturants without a wig. I feel almost previlage to show the public the way I look. Family and friends prefere me without a wig. I even laugh about my bauld head at work and everyone accepts it
Keep in touch if you need to talk.
Best regards and keep your head up
Nanette
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Hahaha your post made me laugh. Good attitude
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Permalink Reply by Lucy on
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Hi Kayleigh
like you I had periods in my life when I had a few bald patches and the hair returned however just over two years ago the hair didn’t come back and over a period of six months I lost all my hair and have alopecia totalis. I’m 55 and have been with my partner for 14 years. He has been a tremendous support as has my family and friends on my alopecia journey so far. I was devastated and had 7 months off work trying to come to terms with the loss of my long hair,eyelashes,eyebrows.i spoke with a counsellor too. I am now 2 years down the line,have found a wig that I feel comfortable in,I don’t wear my hair in the house and when I’m at work I take what I call a “wig break” when my head becomes too warm. On returning to work I made the conscious decision to let my workmates see me without my wig. This took away any awkwardness both for them and myself and I always answered any questions they had to ask. The biggest person to help me through all of this has been my 2yr old granddaughter Millie. I had my full head of hair when she was born but she will never know that. She tries the wigs on, kisses my bald head to her I’m just Nana . I got my eyebrows tattooed,bottom eyeliner tattooed and I practised my eye makeup to disguise the fact I don’t have eyelashes. What. My alopecia has given me is an awareness of what is important and that a person is far more than just what’s on the outside. Feel free to message me anytime remember you don’t have to go on this journey alone and you will be amazed by how your close friends and family will rally round. Chin up take care you’re beautiful with or without hair always remember that xx
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Permalink Reply by NoHairDon'tCare1006 on
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I just spent about 20 minutes typing a reply, to have this site tell me it was too long to post. I am 20 and a sophomore in college. I’ve gone through everything with boyfriends and friends telling them about my alopecia. I have many stories and would like to get the chance to send you what I wrote as well as talk. When you get the chance add me as a friend on here and I’ll message you! You aren’t alone!
Looking forward to hopefully talking
-Emma (your friendly semi bald Illinoisan)
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Hi Kaleigh,
I do not have alopecia but my 18 year old son does. He was diagnosed last year and lost all of his hair including some eyebrows and eyelashes. Common treatments did not work. Luckily, a relative recommended we try a different clinic who prescribed him Xeljanz in its off-label use. He now has a full head of hair. The loss of hair is devastating, but not having access to potential treatments that could resolve the hair loss makes it worse. There is a thread on this website for people who are on it or who are considering it.
Good luck.
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