Replies to This Discussion

Permalink Reply by sharon on November 16, 2008 at 4:04pm

i wore a hat or scarf at home and still do but only for my vanity i did suffer from depression and did have a terible time at school but all that is in my past and im ok now

sharon

Permalink Reply by Lori D. on December 23, 2008 at 5:25am

Mandy, you're the first person that's had the same experience..not being able to say certain words...thank you for your response.

Permalink Reply by sharon on November 16, 2008 at 4:02pm

that is very sad and im so sorry this happened to u x my parents where ok no big thing was made about my mum was the best and probably handled it better than i would of if it had been my children . i had the worse time at school but home was my santaury . you never know how people will react and your parents i guess did nt know what else to do

sharon

Permalink Reply by Jennifer on December 22, 2008 at 10:28pm

I have to say that breaks my heart, One of my worst fears is that one of my children get it from me. But, I would never be ashamed. I guess i got really lucky on how my parents treated the situation. They were great, I'm sorry that you had to go through that. Just to let you know, that soooo many people don't really look at it how your parents did. I have never kept it a secret. My whole life people have known my condition. Of course some kids were cruel. But every single family or friend has been kind about it. I'm sure that you will see that :)!!!!!

Permalink Reply by Lori D. on December 23, 2008 at 5:23am

I'm so inspired by all of you who haven't kept this a secret..it makes me think: why should I then? So thank you all for the support. My parents were very young and not at all ready for kids. I've come to terms with them and really live my life now. About passing this on to one's children..I've been told by professionals that it's not hereditary but I've seen otherwise since I've joined support groups and heard many stories. I think it could go either way I guess. I lost my best friend to cancer this year, (she was 38), so that kind of thing is a dose of reality for me; a reminder that I am lucky to have my health...And I want to mention, that after having this for 36 years I have a little growth on the very top/front of my scalp, (I've had growth all around the scalp but never the very top). I don't have high expectations at this point but it is nice to see it does progress in a good way too.

Permalink Reply by Melinda Thiele on December 23, 2008 at 7:47am

Lori, shame is like a rock we can carry in our hearts for too long. My mother made the wig choice for me in 3rd grade. Back in the 70's grandmotherly styles were all we could find in KY. I was ashamed of the way I looked and yet afraid of the wig coming off. I think now it would have been a better choice to be a bald girl. Like they say here at Alopecia World, "acceptance" is the way to go.
May I recommend hypnosis to you or others who would like to let go of feelings of shame, walls of tears or other heavy baggage? In one session I released so much of what was pent up in my heart for years. I am a certified hypnotherapist and can look for a good recommendation in your area if you like.

Permalink Reply by Lori D. on January 11, 2009 at 2:40pm

Yes, I wore the grandmotherly style when I was in the third grade too. When my mother was in the hospital having a baby, my hair fell out completely in that time. I had to wear a red hat that had a strap under the chin..(prior to the loss, I had long, almost black, thick straight hair). I remember going back to school wearing a hideous short wig and all the kids asking me why I had cut my pretty hair. When I was still a kid, I blackened myself out of every school picture. I'm so far from that person at this point, but it's been a long road and as I like to say, I'm a work in progress.

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.

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