Comment by Debashish on May 5, 2015 at 2:47pm

Hello autumn.. i really understand your pain and the situation u going through. even i ask god why me? from lasy six years i am wondering why me? but still didnt lost my patience and still fighting with this alopecia. i tried many options to get cure but nothing worked out for me. i dont like that people look at me like or stare me as if i am someone from different world.. i literally lost my confidence. you know what still i am under treatment.. doctors are experimenting on me.. but anyways i still have the hope that one day i will get cure up completely.. at least before my marriage.. i dont want that a girl when she look at me will get scared. i can not tell you how pathetic situations i went through. even people make fun of me. i just sit inside my room and cry a lot.. but i am so hopeless i can not do anything. but still regaining courage to fight it.. so i ask u to be strong enough and try to deal with it.. because we r different.. thats true.  

Comment by chrispc on May 5, 2015 at 2:51pm

I lost all my hair during jr high and highschool as well. I don't think I can even articulate how badly it affected me because I was so overwhelmed by it all. I just kind of sank into myself and couldn't express anything to most people. I'm not sure if this is something you want to hear, but I want to mention it either way, from my perspective as a guy, I feel pretty certain that no guy would think of you as ugly because of your alopecia. I mean you're still going to get looked at, but ya know, that's alopecia, can't really get around that. You're not alone in this though, I hope you know that, there are other people out there including myself who deal with this and we won't miss an opportunity to say something kind. In my experience most people aren't extremely irritating and will be good enough to talk to you and eventually their goodness will make you feel less alone. :)

Comment by Kim on May 5, 2015 at 2:55pm

All I can say is YES alopecia sucks! I lost all of my hair just over a year ago and there isn't a day I don't hate it and wonder WTF? Why me? Super hard during the spring/summer...wearing a wig is not pleasant in the heat, when hiking and I miss swimming! Okay, that being said...what are you going to do? You're right, being 16 and having this is a massive bummer. I am not a teenager, I'm 51 and have step-kids a bit older than you, but I'm not old (even though 51 sounds old to a 16 year old!!) and all I really want to say here is I feel your pain. I get depressed, just cried up a storm the other day. But, I have friends and family that love me as-is. I tell who I want and the others don't need to know. You just get up and do it each day, put on that wig. And I'm sooooo thankful I found a fabulous stylist that I work with to get good wigs and who knows how to color/cut and help me care of my girl. Hang in there Autumn (lovely name, btw), it is what it is. It sucks, but that's the fact of the matter. Talk to someone about the depression..don't let that go unchecked, can wreak havoc if left to its own devices! I wish you didn't get bullied, too. F*ck 'em! Hopefully that's in the past! Okay, just wanted to say I hear you and hope today is okay! Positive vibes from Seattle!

Comment by paula on May 5, 2015 at 3:03pm

can't lie either.....alopecia can suck!  however, now that i'm old  ( 60 now...lost my hair at 28 and was engaged when it started falling out!).....but i have "grown into" accepting it.   people are going to be cruel, nosy, and annoying about it...no doubt.  but also, they can be incredibly kind, supportive, and nurturing.  unfortunately, being a teen is hard enough without alopecia.

i know it sounds trite, but here was my mantra when i was struggling with my hair loss.

1)  i'm not ill, i'm not dying,it's just hair.

2)  how can i stop self pity and begin to help and educate others so they don't have to suffer like i did?

3) find a support group.  stay on this site....it can be SO comforting to see how many of us struggle with this.

4)  be honest and open. if people ask, tell them!  it's called alopecia, it's not contagious, and it's not life threatening. it could be worse.  your honesty will help educate the ignorant, or educate the curious.

5) beg, borrow...( don't steal) but get yourself the BEST wig you can afford.  i do love the internet options for a new look or to give my good pieces a rest, but look up "freedom wigs".....there are other companies but i find them to be the best.  the cap is custom made to fit your head only....it's a vacuum piece so if some idiot ( has happened to me) decides to tug at your hair.....it won't budge a micro-inch.

6) get the alopecia world catalog.  it is full of wonderful stories, gives you info about conventions and support groups ( i belong to "bald girls do lunch")   ...a great group...lots of bonding, laughter and tears.....

7) talk talk talk.....figure out to help others in your shoes.  you do NOT suffer alone.  we are all in the same boat, some of us are sailing in varying directions, but at the end of the day, we are all with alopecia.

8)  EVERY day look yourself in the mirror and say...i am NOT my hair.  i am beautiful  God didn't choose me to have this, but i will pray that i can find out what it mean, and how i can give back to others who are in need.

YOU ARE BEAUTIFUL and YOU need to believe it.

good luck.....you will be fine.  give it time.  one day you will be like me and never even give alopecia a second thought.

Comment by stillhairlessat56 on May 5, 2015 at 3:17pm

Hello,my name is Gary....My hair started to fall out at your age.I also was pick on,bullied and made fun of....uDon't let the ignorant get to you.Your true friends will be there for you.After you graduate from school everyone matures and that will all stop.Some of those bullies just may become your best friends....God created a beautifull girl when he created you.I can tell you that later in life you will meet that special guy,have a normal life and will have normal children.They don't totaly understand the disease yet but it isn't inherited and you're kids will be fine.I am now 56 and have a son who's 35 and a daughter thats 30.I does get better and will find a cure down the road....You are a very beautiful youg lady.Your parents love you as you are.!!!!You are the daughter they always wanted.I'm no 56 and wouldn't wan to do anything different.You hang in there and keep your chin up.....If you need to talk look me up,,,,,it does get better.....Gary

Comment by Michael Powers on May 5, 2015 at 3:20pm

My hair fell out when I was 7, then grew back (mostly) at 12 with waves of bald spots and patches all through high school. Then freshman year of college it fell out completely and has never returned. I was SO extremely self conscious from 7 on, even when I had some hair. All you want to do as a teen and young person is both blend in and (and this is contradictory) be special. I feel like most everyone struggles with that in life as they grow up. What would I tell myself as a 16 year old if I could go back ...

> find the things you like and get really good at them - this gives you confidence and groups of friends who will stand by you and get to know you for you

> find other things about your body that you like and highlight those because losing hair can make you feel like you and your body are at war ... but its not a war ... your body is your home and you need to celebrate it - being young and relatively healthy is a gift (i had a younger sister who has palsy and could not walk far and could not learn to drive a car - so many people have more limitations than you - instead of asking Why Me which I did every day, I would tell myself to accept that everyone gets hurt at some point in life because of an accident, illness or bad luck - we are fortunate if we are mostly healthy and can move around)

> I would also tell myself that many people find men, or woman, without lots of body hair attractive - more attractive than 'normal' people - its been true my whole life - once I got a bit of confidence in college my dating life was fantastic :) - if I had known that in college I would have built up that confidence earlier and asked a lot of people out!

> Every year feels like an eternity in high school but really, time moves very fast. I would tell myself to pull up my head and realize that tons of very very cool adventures are going to happen - I traveled all over the world with a backpack and was lucky enough to be part of the founding team at YouTube (how freakin fun was that!)

> I would also tell myself to treat my body better - I got too much sun on my head as a teen and college student - I should have protected it better with hats and wigs. Because I thought my body was at war with me I think I didnt take care of the exposed skin on my head. Look at your loss of hair as something unique (at some point as creatures we lost most of the hair on our bodies - i think we kept head hair because it protected us from sun and kept some heat in - but now, with modern life, we probably dont need so much hair protection - so maybe those of us with Alopecia are evolving?)

Some thoughts ... glad you are on this forum and asking questions and giving opinions

Comment by Kim on May 5, 2015 at 3:28pm

Autumn, just saw this AW member video, thought of you...

http://www.alopeciaworld.com/video/alopecia 

Comment by Barbara on May 5, 2015 at 3:49pm

Autumn, I'm not 16 either. I lost my hair a little over a year ago. Yes it sucks! I get comments & looks too. I was bullied in school for my weight. It was hard and kids are cruel. I couldn't wait to get out of school but when you get out the boys will lose their hair & the girls will get fat and you will still be beautiful!

Comment by Mark S. Hansen on May 5, 2015 at 3:59pm

Hi Autumn My name is Mark Hansen and I live on the east side of Milw WI. I started losing my hair in little patches in the 4th grade. A little fell out and cam in etc. By the start of 7th grade it was falling out and not coming back. I had patches of hair on the back and sides of my head at times, that is until it was ripped out by bullies on at least a few different occasions. Needless to say my 7th-9th grade yrs were hell. My parents bought me my first wig the summer before I went into the 10th grade. It was not a secret for very long. My wig was pulled on etc. But from what little I remember it may have not been quite as bad as my junior high school years. I'm thinking that if I did not have it and I went through what I did in high school I may have dropped out. Nevertheless, I proceeded to buy new wigs about every 3 years at a custom place here in Milwaukee to hide my condition. As you might guess I have Alopecia Universalis, no body hair anywhere. And whereas you may be able to cover up your bald head u cant cover up the fact that I have no eye brows or eye lashes. However, whereas I felt that I had what I would call, psydo-confidence, because of my quality wigs, what I was actually doing over all those years was hiding under them. Instead of giving me the courage to approach women in bars night clubs gyms in college, etc. I just said to myself, "well what if I ask her out and then tell her I wear a wig and I am completely bald and she rejects me?" So I failed to take many, many, chances over the years. About 10 years ago I finally took the last one off for good. Now I wear a baseball cap everywhere, because I am just so used to having something on my head. I don't think many, if anyone knows me without it. The blessing and the curse of this condition is that there are no telethons or TV fundraisers for this problem. Because it is not terminal or life threatening. But the downside is that not many people know anything about it. So they may think I have cancer, etc. I get looks every day, on buses, at bars, etc. But people don't ask me about it because they think it would be impolite. On the contrary, I love it when they ask. In any case, as I said I hid under these wigs for 45 yrs. yes 45 yrs. I am now 59 and I have never had a girlfriend or relationship in my whole life. I had sex once when I met someone over the internet 10 years ago and lost my virginity. Before that I did not touch a woman since the last time I had a date in 1989. And I was scared to death that she would notice I wore a wig. I think back now and say that I just should have told her. But I didn't. To this day I am single and alone as any one can get and most of the women I am around are 21-35-45. I don't care about the age difference, I cant. But the story is still the same, they don't ask what my prob is and I cannot sit down at every bar or stop everyone at my YMCA and tell them I have this condition, etc. My mom used to say that she was sorry that they even bought me a wig in the first place. I never blamed them and thanked them at the time. And I still don't. But in the beginning I had not intention of wearing it for so many years, almost my whole life. I don't know just what advice to give you. I am on Twitter and Face book (I consider myself a social critic of human and social nature, politics, the media etc. under "Markyisd1" if you look me up. But I do not have my own computer so I only use the one here at the library and hour or 2 a day and it does not have a camera. But I think that, especially bec of social media and the digital/on off world, I think we live in the most looks/surfaced based, (what's on the outside) superficial society than at any time in the 20th or 21st century.

All I can say is to try to tell people about your condition when you can. Those who don't want to know you or have no intention of wanting to be around you because of this problem (I have experienced that as well) are not worth knowing in the first place. My mom often used to say "Mark, when you think about how bad you have it think of kids with cancer or who are in wheel chairs or homeless people etc" I often say that life is relative, which means that things change meaning when we compare something to something else. In other words we are always going to be richer or poorer or smarter or less intelligent or stronger or weaker than someone else in this world. But I know that even that does not take away our pain and suffering of the worst symptom of this condition, ignorance and or unacceptance. God bless you Autumn. You deserve happiness and I pray you get it. I am also at thehansen@yahoo.com   Later, Mark S Hansen      

 

Comment by JannicaOlin on May 5, 2015 at 4:01pm

I so get it. It is not easy.

What works for me, was first of all, to embrace what is so right now, and that is that I have no hair. I can't change it, that is what is so.

And I don't see Alopecia as a thing that happened as if it's a separate thing that took over my body. It is a label for your immune system being confused, and it is trying to keep you healthy by keeping your hair away from your body.

I am an actress, and when I started losing my hair, I was faced with concerns of losing out on work, or not being pretty enough etc.

I remember watching Dancing With The Stars that had double amputee Amy Purdy dancing the whole season, and she inspired me so. She lost both her legs and look what she is taking on. I''m only losing hair, and who do I want to be in the face of that?

There are several actor friends of mine that are ALopecian, and out of embracing themselves, are super successful. That inspires me. 

I will be walking the red carpet later this month for a documentary I was in, and I'm gonna rock the bald. Not just for me, but I know it will make a difference for those that live as if they are not normal.

You are perfect and normal :) This is your new normal! Be kind to yourself and your body. Your body is working hard at keeping you healthy, it just doesn't know that it's protecting you from yourself:) 

Also, I recommend the Landmark Forum to everyone. It's a personal development program that takes place in one weekend. It has transformed my life and I love my Alopecia now. It's worth looking into to see if it's something you'd be interested in.They have the forum for teens too, in countries all over the world. 

www.landmarkworldwide.com

Sending you lots of love!

Jannica

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