Alopecia World
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But it does define me
I am in the 9th grade and I was diagnosed with alopecia universalis. I got it when I was in the 5th grade when my strands of hair that i thought where just split ends. 7th grade was when it really started to come out in patches until around 8th grade it was all out and I was completely bald. Not only did my hair fall out on my head but I have hairless parts on my arms and legs. I have no eyebrows and I have to draw them on. My eyelashes have recently started coming out and i dont know what to do. Im a teenage girl and how society is one of the things that is so important to me is being taken away. I had long thick black hair its so hard to look in the mirror because I feel so ugly. Its easy to say things like dont let alopecia define you but it does. It affects how you feel about yourself. It is so hard going to school constantly being asked if my hair was a wig and people asking to touch it. In my 7th grade year I once got chased down the hall to my next class because 2 boys where trying to pull it. It has been hard and I cant get out of this dark hole. I try to smile and be happy but it just is not working. I want to feel pretty I want to be confident but I just cant. Im so sad and I just dont know what to do. Like im still a child I shouldnt have to be worrying about this im supposed to be worrying about school and education and friends not hair loss. im completely bald and I feel like im drowning.
Replies to This Discussion
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Permalink Reply by Kimberly on
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All through our lives, decisions we make, things that happen to us, like alopecia, etc... It all defines us into who we become. Although we can't control everything that happens to us or how people react, we CAN control how we deal with it. And we all go through a lot of emotions, grieving is one of them. I've been there. Life is too short though to let alopecia rob your happiness and joy. Happiness is a choice. We get up everyday with choices to make. My prayer for you is to see that you're beautiful inside and out, that you will come through this a stronger person and have a fulfilled life. Life isn't fair, but seriously it could be much worse, like cancer or some other disease that's life threatening. Advise is look at all the positives in your life, put your focus on things you have a passion for. God bless and hold your head up.
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Permalink Reply by kitty on
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I am so sorry this has happened--it totally stinks. BUT, while alopecia is part of your life right now, no, it does not have to define you. You can also be the girl who is beautiful writer or a great runner or fast skier or a budding artist. Do not let hair define all of you--it is yet one piece of who you are. There was a wonderful article on a young man who has Vitiligo inthe DC area who is a champion runner. If you watch "America's Got Talent"you will see that recently a young woman with alopecia did an amazing dance--and told the judges at the end about her alopecia and then the camera video-taped her with no hair and you know what? She looked great. Trust me--this is not easy and I am not saying to say it is. But it is only life-aftering if YOU let it be.
Maybe go volunteer at a pediatric cancer ward one day and see what those kids are going thru as when I get down about this issue, it makes me feel better to realize that while Alopecia sucks, you can/will still have a great life.!!! good luck and write back when you can. Big hug to you. And yes, the Yale study is promising although it may take a while.
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Permalink Reply by Cinder B. Rand on
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Dear Down with everything,
Your right about just wanting to be a kid. I completely get it. Unfortunately we do not get a say in what happens to us and what is presented before us. I am in my 7th year with having no hair anywhere on my body. It happened fast, very fast. Kids can be very cruel and insensitive. Some of the people I have met through having alopecia have told me stories about growing up with it. This might be a very good time for you to write down your thoughts, your feelings and your experiences. Post them on this site as well. You will be so surprised how you will inspire others in our/your situation. This may help you with moving forward and getting yourself stronger. Please be careful with any “cures” I just have not found any and I always worry about side effects. I know you are young and may not be into make up yet but there are so many things that you can do when you are ready. You will be so pleasantly surprised when you are ready to get into this. Eyebrows can be tattooed and look natural and beautiful, there are all sorts of alternatives for you to look into. But of course when you are ready all of us can help you on this wonderful site. Please keep in mind you are not alone. There are so many of us with alopecia more than I ever realized. You always have all of us to share your feelings with and people will always respond to you (you might not always agree) but you will always have support and responses. Try not to let the bullies get you down. Their minds are very small. Yes this thing does define us, what doesn’t? This can end up being something not necessarily bad in the long run. Just know that most of us here can seriously relate to what you are going through. I am sorry you are feeling ugly I am hoping that this will pass for you and soon. Maybe when it does you can post a picture of yourself? Just please know you are not alone and do not have to go through any of this alone. You are stronger than you think, we all are. Be strong sweet one, I will be thinking of you. Peace and best wishes
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Permalink Reply by wiz on
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Hi, well I have been diagnosed with severe alopecia Areata, and boy it really sucks. I see many people that have been able to surpass the emotional struggle that comes with alopecia. But I am just not that person. It really is a downer. I am 22 and fortunately I have some real great friends that have done everything in their power to help me out with different products and hair extensions as well as keeping up with appearances in public. I have found that wearing nice head bands keeps the attention away from your hair. There are youtube videos about how to make your wig look more realistic, so maybe you should check them out. Another thing I would like to say is that, most of the time people are pretty clueless. Sometimes I purposely stop and stare at someone's hair as if to check if they are wearing a wig and I feel ridiculous, because I realize people really don't do those things. So keep strong. And hold on. This too shall pass
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Permalink Reply by Ashlee on
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I know what it's like. I was diagnosed when I was 15 and I can completely understand how difficult it can be, being a girl and losing your hair. That thing that some girls spent hours on before school, curling, or straightening and we are just stuck trying to do whatever we can to feel normal, and try to make it so people don't stare. It took me 8 years to finally be okay with it and accept that my hair was just an asset and it doesn't affect how smart I am, or my ability to play sports, or sing, or whatever I wanted to do really. It's tough but things do get easier. When you realize that most people don't care if you have hair or not, and that you are the same person with or without it, it'll make things so much easier. And the energy you put out to the world will come back to you. I'm always here too if you need to talk at all. :)
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My name is Mark and I live on the east side of Milw. I am 58 now, singl, nvr married. I got alopecia when I was in 4th grade and it turned into alopecia Univsrealis by age 15. Part of that was no doubt due to the fact that some of my patches of hair that I did still have on my head were ripped out by bullies. My parents bought me a wig when I was 15. I didnt expect to but I wore one for 40+ yrs. I finally took it off about 10 years ago. And now I wear a baseball cap every where bec I am so used to having something on my head. And with univsrealis we cant hide the fact that we dont have eye brows or eye lashes either. But the wig did not help my social life at all. Instead of it giving me confidence to approach women at college bars etc, I just didnt bec I thought that if I introduced myself that evetually I would have to tell them that I was bald and they would scare away. To this day I have never had a girl friend of relationship in mmy whole life. I dont know what to tell you except to be open about this condition to pep when you can because ignorance is the worst symptom of this condition. Take chances in life, if you lose, or if she runs away, get up and try again. Its easy for me to say. I already went through 7-9th grade prob the two worst years of my life. But hang in there guy. Mark S Hansen I'm also on twitter and facebook.
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Permalink Reply by Layzeebabe on
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Hi there,
I understand you are going through a very tough time and some days are unbearably hard. I am so sorry to hear you are hurting inside and I hope your parents or guardians are aware of your feelings and are giving your their full support. As many others have said, things will get better for you. Whether you get your hair back or not.
I will have to argue that alopecia does not and will not ever define you unless you let it.
I have had alopecia since I was 3 years old ( I am now 26) and wore a wig a few times in my life so I can relate to the bullying and teasing and boys chasing, trying to pull my wig off. It was awful and I'm so sorry you have to experice that.
I chose not wear a wig growing up ( for the majority of my life) because I have had friends and family support me and accept me for who I am inside, no matter what I look like. If some days I choose to wear a wig, it may change the way i look and the way people percieve me but it doesnt change who I am inside. Yes, your life experices shape your personality but I think you will come to realize that life is always changing and it is unpredictable. You can not let life circumstances define you, otherwise the definition of who you are is always changing.. So how you define yourself is your choice. You can choose to define yourself based on cirumstances that are always changing like your looks or your possessions... Or you can choose to define yourself based on who you are inside. Do not let your appearance defeat the strong, loving, beautiful person you are inside.
As someone else suggested, find something that you are passionate about and something that brings you joy. Soon those harsh feelings will go away. Until then, stay strong girlfriend!!
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Permalink Reply by Donna on
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You are absolutely correct...it DOES define you. But you give it the definition. I am stronger, more confident, more free that ever before, because of it! You will get there too. Because there is so much more to living this life than our hair...!!!! Good luck
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Permalink Reply by Jessica Hoschouer on
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OMGOSH!!! I totally understand your story I myself will be going into the eighth grade. I though found it easier to deal with after I found all of my good friends. I think it helps when you have people that are almost always around you so that they can protect you in one way or another.
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Permalink Reply by Squirrel on
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I was diagnosed when I was 14, and I understand how you feel, even now at 35. I still struggle with some of the same fears and insecurities every now and then. I am so sorry that you are having to go through this, particularly at this time in your life. I know firsthand how it can feel as though your femininity is being stolen away from you, and how friends and family making assurances doesn't really make a difference in how you feel about yourself.
The kicker is that no one can make you feel good about yourself. Only you can do it. You must look for ways to make it work for you.
Also, you need to allow yourself some time to grieve! Your hair loss is an actual loss. People who haven't been there don't get this---it's not just hair... it's a piece of yourself. It's an identity you are no longer able to truly embrace because it is no longer you. You don't have to smile about it right now. You have every right to get mad about it, to cry about it... whatever you need to do to get yourself to a point where you can accept yourself exactly as you are. And you're right, it does define you... sort of... in the same way that experience defines each of us. As you get older, you will find that you have a unique perspective on human nature, on kindness, cruelty, love, and so much more... It's okay to allow it to shape you, just allow it to shape you for the better.
THERE IS NOTHING WRONG WITH YOU. YOU ARE BEAUTIFUL.
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Permalink Reply by Veronica on
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So sorry for you to have to go through this so young. I'm so grateful for this site... it puts you with a group that understands! I pray that you find your peace. I rebuke the sadness and fully expect that God will lead you to your place of beauty and satisfaction and that virtual and actual arms cradle you in love! In the precious name of JESUS. Amen.
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Permalink Reply by Auntie Sheila on
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Praying for you! I lost my hair in my early thirties and it was just as hard emotionally. I was actually a substitute teacher when it happened and I quit because I know how mean teenagers can be. I have a son and I wear a wig so kids don't bully him because of my AU. Anyway, I now work at the high school fulltime as a secretary and I hate when people ask if it's a wig. It has been over 4 years, and it is still hard. I just wanted to suggest that if you are not involved in a youth group, that you look for one (I volunteer with my son's at First Baptist Church and the point is to support and love each other there) and to read Captivating by Staci Eldridge and If Your Hair Falls Out, Keep Dancing, I forget the author, but she's on alopecia world. Both helped me a lot! May God bless you, He has a purpose for everything.
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