Alopecia World
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Who is afraid of the normal things to be excited about?
Hello All!
I am new to this and the main reason that I found this website is because of the questions that I have.
I am a 23 year old, who is just getting a start of life and as i think of the future I am scared. I stopped wearing wigs when I was in second grade, I haven't had hair growth since I was 6 mths old, and have adapted my style with not having hair. I dont wear thin tank tops because there is no distraction from my shoulders and my head. I feel like i look like a man. I constantly get confused with a man, which doesn't bother me that much at the time of insult, but over time it wears on you. As I have gotten older I start thinking about the normal things you think about like getting married and having kids. That's where I panic. When/ if I get married I want to wear a veil, but where am I going to attach it. How un natural will it look. And don't get me started about the dress. Looking back on my dislike of wearing thin strapped tops, what am I going to do to break up the bear skin from my shoulders and head. I have tried to talk to my family and friends about this and all they have to say the kindest thing that they can say, 'You'll look beautiful no matter what.' or ' You can glue it to your head. 'LOL I love them but they just dont understand. That's why I seek the support in you guys. My commrads, people who have the same fears as I. People who had the same frears but overcame them, as we have to do with everything.
That leads to my next dilema. Children. I fear for giving them the same hard life that I have been given. I fear for blaming myself for doing this to them if they do indeed have AU as I. I have heard my mother blame herself because it was something that she believes she did, but she has a full head of hair same for my grandmother great grandmother and my sister. How was she to know? I know. That's the difference.What are the chances my child could develop AU? Should I take the chance. How would I cope with that?
Then if I have children who have been blessed with a full head of hair, how do I explain it to them? How do I help them cope with having a different mommy? How do I prevent them from the horrible things that will be said about me to them? How do I protect them from getting made fun of like I did growing up?
These are all the things that make me panic and want to stop my life in it's tracks to not have to deal with this. I have had to go through so much already dealing with my own baldness, will I have enough energy to help one other person through this?
It's a catch 22, and I don't know how to handel this. Or even if I want to put other people through it.
I want to have a family, but I don't want to make an innocent person have a harder life then what it needs to be, because it is already hard enough being normal, let alone if you have a bald mom or are bald yourself.
Who wants to welcome a child into a world with such a bad start?
I am new to this and the main reason that I found this website is because of the questions that I have.
I am a 23 year old, who is just getting a start of life and as i think of the future I am scared. I stopped wearing wigs when I was in second grade, I haven't had hair growth since I was 6 mths old, and have adapted my style with not having hair. I dont wear thin tank tops because there is no distraction from my shoulders and my head. I feel like i look like a man. I constantly get confused with a man, which doesn't bother me that much at the time of insult, but over time it wears on you. As I have gotten older I start thinking about the normal things you think about like getting married and having kids. That's where I panic. When/ if I get married I want to wear a veil, but where am I going to attach it. How un natural will it look. And don't get me started about the dress. Looking back on my dislike of wearing thin strapped tops, what am I going to do to break up the bear skin from my shoulders and head. I have tried to talk to my family and friends about this and all they have to say the kindest thing that they can say, 'You'll look beautiful no matter what.' or ' You can glue it to your head. 'LOL I love them but they just dont understand. That's why I seek the support in you guys. My commrads, people who have the same fears as I. People who had the same frears but overcame them, as we have to do with everything.
That leads to my next dilema. Children. I fear for giving them the same hard life that I have been given. I fear for blaming myself for doing this to them if they do indeed have AU as I. I have heard my mother blame herself because it was something that she believes she did, but she has a full head of hair same for my grandmother great grandmother and my sister. How was she to know? I know. That's the difference.What are the chances my child could develop AU? Should I take the chance. How would I cope with that?
Then if I have children who have been blessed with a full head of hair, how do I explain it to them? How do I help them cope with having a different mommy? How do I prevent them from the horrible things that will be said about me to them? How do I protect them from getting made fun of like I did growing up?
These are all the things that make me panic and want to stop my life in it's tracks to not have to deal with this. I have had to go through so much already dealing with my own baldness, will I have enough energy to help one other person through this?
It's a catch 22, and I don't know how to handel this. Or even if I want to put other people through it.
I want to have a family, but I don't want to make an innocent person have a harder life then what it needs to be, because it is already hard enough being normal, let alone if you have a bald mom or are bald yourself.
Who wants to welcome a child into a world with such a bad start?
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Comment by Kristen Ridenhour on October 22, 2008 at 12:04am
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Amanda, I know exactly how you feel. I have many of the same fears. Just the other day I was watching some tv show (I think on TLC) about brides shopping for their wedding dresses. Looking at all of them I started to wonder what I'm going to do if/when I get married. I refuse to wear a wig but not everyone has me bald (a fare number have tho) and I don't know how that will go over with everyone. As for kids, I'd have to say my biggest fear is passing on alopecia on to them.
For me, when I start freaking out about things like this I have to stop and remind myself to take everything one day at a time. Neither marriage or kids are in my near future, so I try not to think about what might happen too much. Whoever you decide to spend the rest of you life with should be able to help and support you through this along with your family and friends. And everyone on AW are always here as well! You are a strong and beautiful woman, don't ever forget that.
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Comment by Dominique on October 22, 2008 at 4:18am
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Amanda!!! The minute I started reading your post, it just rang with every emotion in my heart. Similar to your story, I have not had hair since a very young age, and have never really hidden it. I am also now at the age of 23, and just recently started considering what the rest of my life will actually be like without hair.
I've never really thought about the future that much, but coming close to settling down with someone (who is now not in my life) - and with my twin sister getting married soon - my own mind is echoing many of the fears you expressed above.
From the less important issues of the veil, to what am I going to do if I pass this onto my children - I believe I can deeply empathise with your concerns.
For me, I agree with Kristen - you can only take things a day at a time. Some of the truthes I turn to for consolation when I start worrying about such concerns are:
1. I'm 23 years old. I don't know how I got through my childhood and my teenage years - but what I do know is the strength it took is still with me and with all of us that deal with the challenges of this condition every day - even on the days when it seems the easiest thing in the world.
2. I have an identical twin sister, who has a beautiful head of hair - and has never experienced patches or thinning hair (touch wood). We are supposed be genetically the same - yet she has not been touched by alopecia. Despite worrying about this in the background constantly, it does give me some comfort that perhaps my children will be the same.
3. Regarding wedding dress concerns, I know I made it through many other important "beautiful" events including my graduation and being bridesmaid and flower girl to my sisters. Not having hair didn't impact on these things. I even wore a ring of flowers on my head for a formal I went to - and instead of looking 'odd' I recieved many compliments on how elegant I appeared.
4. Breaking up the space between your bare shoulders and neck is easy done with an elegant and much deserved necklace - accessories are our best friends :c)
I know none of the above has probably done much to cheer you up, and when I let myself think of things too long - they are only temporary comforts.
There are a number of women on here in similar situations to you, all of which are willing to talk and comfort and exchange ideas and concerns.
I had a quick look at your photo, and anyone who mistakes you for a man is an idiot. Remeber - you made it this far :c) Who knows what else is to come, but on the up side - you know you have the strength, your family seem supportive and you've found a whole world of support here.
Take care of yourself
*hugs*
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Comment by Diane on October 22, 2008 at 10:10am
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Bonjour Amanda,
First of all, Welcome to AW and WELCOME to parenthood! ;-) well, this is a welcome in advance, of course!
I've build my familly through international adoption. My daugthers are of Chinese origin. They have a caucasian mother with no hair; my husband, their father, do have hair, he's caucasian as well and tall (6'5''). So to say the last, we stand out of a crew and deal with difference all the time
Bogie has summarized my taugths very well... just to add from my daily experience: my kids have NEVER reported to me that they were teased because of my alopecia. I've made it clear to them and other kids that I was just allergic to my hairs (my children are 4 and 6 yo), not sick. In my house, I'm almost all the time bald (nothing on my head) and theirs friends have seen my that way and that is it.... Clémence and Elise mother has no hair, so what...let's play and have fun!
I'm sure my alopecia has made me a better mother! Parenthood is a wonderful experience! Do not stop yourself from it just because you have no hair!
Diane
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Comment by Alison on October 22, 2008 at 6:56pm
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i'm 23, i've gotten married, but i'm a wig lover. it was hard at times though thinking i'd love my hair to be in a frennch twist like my sisters but i still loved what the hair dresser did.
u do find a man who loves you no matter what first! then he doesnt care what u look like, but u will and its just something u figure out, on my wedding day i had vey faint eyebrows drawn on because of my fair skin i never have eyebrows i didnt want to look like i was someone else but i wanted to look beautiful. i'll tell u theres nothing like having someone who looks at you with love when ur bald, in sweat pants and feel ugly. it lifts ur heart. my dad once said i might have trouble finding a nice man but i have lots of lovely male friends who also like me for who i am. i think u have to love urself first.
experiment with wigs, dresses and make up its fun!
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Comment by Esther on October 22, 2008 at 10:00pm
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Hi Amanda
I have a 3 year old daughter and I think about this all the time. I would never want my daughter to have to endure a life with alopecia. I did read somewhere, tough, that the chances of passing this along to your children is very slim. Im still in the process of trying to cope with alopecia... i pray everyday for my own strenght and for her.
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Comment by Amanda Crouse on October 22, 2008 at 10:09pm
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I want to thank you all for making me feel welcomed with my fellings and not alone! You all are so great and each and everyone of your comments put my heart at ease. You will never know how much you have helped me!!! Thank you all!!
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Comment by Amber Lounder on October 22, 2008 at 10:36pm
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Hi Amanda Welcome to alopecia world! I'll agree with Sandy in saying " You are a very special person for coping with alopecia the way you do" I'd love to go out bald I am not ready yet AT is very new to me. My aunt had it ,but she got her hair back. I'm waiting to see what fate has instore for me ") I have four children, they would be still beautiful and loved if they had AA. They love me without hair the same as before. AT hasn't changed anything in my life,only the way I view myself.
I think it forces one to look deeper ,to really get a sense of who we are. Sometimes a hard thing to
do.
I can tell you one thing, any child would be lucky to have a strong loving mother like you:)
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