Replies to This Discussion

Permalink Reply by Johnny Q on December 29, 2008 at 1:55pm

I am so glad to have found this place! I'm already meeting some wonderful people.

I want to say that I don't remember much from when I lost my hair. I think it really scared my mom because she didn't know what was happening. She was scared for me. No member of my family ever made me feel like a freak because of it. No one was ashamed and I know there were a couple of times that members of my family fought on my behalf, because I was being made fun of. I love my family for never making me feel like I was anything less than a human being.

For all of you who did not have an understanding family, I am sorry. It's not your fault they are jerks. I have had many friends with bad parents and I would bet anything, that if it wasn't the Alopecia, they would have found some other excuse to be mean to you. Some parents are just ugly, hateful people, looking for anyway out of their own shitty lives. Usually this takes the form of some kind of abuse. It's their problem, NOT YOURS!

Always remember to keep loving kindness in your hearts, don't give in to fear, anger and hate. This leads to the dark side of the force. ;)

Permalink Reply by Lori D. on January 11, 2009 at 2:47pm

I agree Sandi, I don't open it up for everyone to know. I think it's partly because it's just part of my makeup and I don't feel the need to share it with everyone. And then there are always a zillion questions...I really just try to be as good a person as I can. I've done a lot of healing, but I know there's always more progress to be made.

Permalink Reply by GP on January 27, 2009 at 11:40am

I'm new to the site, but I wanted to share my story. I lost all my hair at age 4. I'm now 34. As a child my parents would find large clumps of hair on my pillow in the morinings. When I washed my hair large clumps would fall out. My parents took me to the doctor. He told them I was obviously pulling my hair out in my sleep. The doctors reccomendation for my parents was to shave my head. If the hair was gone, there was nothing for me to pull on. However, my parents waited, and waited, and waited for my hair to return. It never did. I go back to the doctor and he says it must be something else. Thats when all the other doctor visits started. The doctor visits ended after final battery of tests at the Cleveland Clinic. The clinic told my parents I had AU, and that besides not growing hair, I was very healthy. My parents tried many remedies to regrow my hair. Nothing worked. My parents couldn't get me to stay on any remedy. I didn't care that the hair was gone. Yes. I was embarressed many times and cried as a child. But I would have rather been just a bald kid then keep trying all the rememdies. They even had me fitted for a wig. A very bad one at that. To be nice I wore the wig home. When I got home I threw it in the closet an it never came out again. My parents took me back to the doctor because I did not want to keep trying all the medicines, remedies and such. The doctor told them that I obviously had accepted the fact that I was bald, and now they should to. That's when it hit home to my parents. I never had to try any more medicine or remedy again. They were scared for me. They wanted me to feel "normal". The didn't understand that I had accepted the fact of being bald and that being bald is normal for me. My parents are very accepting of who I am hair or no hair. They had the best of intentions. I understand why they did what they did. I'm very fortunate to have the parents that I have. I wanted to share this with everyone in this group. I know everyone's experiences are different, but I truly believe AU offers us a very unique perspective life. I believe growing up with AU makes us more sensitive to other individuals who may be different in their own way. Growing up with AU can and is very difficult. If there is anything I can do for those individuals still struggling with acceptance, please don't hesitate to contact me. Thank you to everyone on this site. This is the first time I have ever told this story to other folks with AU.

GP

Permalink Reply by Monique on October 3, 2010 at 8:40pm

My father would tell me to put my wig on around the house. He called me "fish face" several times. Needless to say, I've had very little confidence around men growing up. I once asked him, when I was very young, if anyone would ever love me and he said "You'd better get used to it - no." Well, I have a wonderful husband and I've loved and been loved by many people. It could have been a lot easier without that early, negative influence. What parents tell their children has such a profound impact.

Permalink Reply by Fotini Constantina Spero on March 11, 2011 at 9:17am

Wow, that is so similar to the way I felt it is scary. I have had it since I was 6 months old and I don't know if my parents were ashamed but I recently found out they blamed themselves. They took me to every kind of doctor on earth, even a healer in Greece (we are greek), after steroid therapy that turned me into another person we finally gave up. Until last year (I stopped wearing hairpieces) my father still told me to put my hair on when we took pictures for Christmas gatherings and yes it was humiliating. It is hard not being ashamed of yourself when you feel like your parents, who are supposed to love you no matter what, are ashamed of you. I have to say though, not wearing a wig has made all the difference in the world. My parents don't see the fear in me anymore and they seem like they don't feel it either.

Permalink Reply by Crystal on May 8, 2011 at 8:50pm

It really hurts to read these comments, and see parents respond that way. Our parents are the two people in this world that is suppose to love us unconditionally I grew up in a small community and most everyone there knew that I had no hair. Now some people thought it was cancer but all that were near and dear to my heart knew differently. I found that the kids in the community were more hurtful with their words.But I have a wonderful family that accepted it right from day one. My parents did all that they could for me from trying different treatments to the purchase of wigs for me. Everyday my mom would tell that I was beautiful with or without hair and it was what was inside that made a person love you. My dad I think found it a little bit harder and would often make a joke but not hurtful jokes. My moms famous words to me were... I know what you are going through is hard but you must think about all the little children that are out there in the world fighting for their lives. She always kept me grounded and made me realized that at the end of the day it was only hair and that I still had my health. A dear friend once told me God made few perfect heads and the rest he put hair on them!

Permalink Reply by KFlame on February 8, 2012 at 4:25pm

I think in some ways I was lucky with my parents, I remember as a child going for appointments getting all this smelly stuff my mum putting it on my head a lot of nights… it came and went patches here and there, but no real fuss was made… But I think because they made it feel really ‘normal’ for me, I became somewhat naive about it, so when it suddenly got worse in my teens I was a bit naive about what my ‘hair’ looked like until I was in late teens when I finally got to the point my ex-boyfriend bless him suggested I go see a hair dresser, and gently broke it to me that I need something…
My mum though was a bit odd as I got older, she was shocked a bit by the wigs, and worried me about having to shave my hair off (luckily in some ways my hair all fell out so never had to actually shave) She still looks at me a bit odd unsure what to say about my wigs as they change.

Permalink Reply by Jasmine Harrell on March 2, 2012 at 11:04pm

I was diagnosed with AA at the age of 12.No one in my family understood that there actually is a disease that causes your hair to fall out. I was told by my stepmother (who was the maternal figure in my life) and my aunt to find something else to do with my time than to pull my hair out. They blamed me. I too then began to blame myself. I carried this with me for a long time. I continued to buy every hair product I could that I thought would help thicken my hair, help it grow longer, and stimulate growth in the areas where there were patches. I am just know coming to terms with it. Just had a treatment of cortisone shots on Thursday. This will be my second go round with treatment. It's so frustrating at times. I have broken down crying in the dermatologist office. It really does something to your confidence and self esteem.

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