Comment

Comment by Dean on June 3, 2013 at 3:03pm

People just don't know how to react. They are conflicted by wanting to express sympathy on one hand but not to make a big deal on the other. Seeing someone losing their hair can be a little shocking at first cause people don't know if you have cancer or what. Try to allow people some room for first reactions to be all over the place. Whatever they say, they are really just looking for your reaction to tell them how they should treat this issue. If your response is, "Hey, it's no big deal. I'm a happy healthy person who happens to have funky hair. I'm not depressed about it and neither should you be." Then that is how they will act going forward. Give your parents some room too. They feel responsible for genetically giving you a challenge to overcome and they wish they could take this - and all challenges from you. It makes them feel guilty. That's not rational but it's likely how they feel. So they say they're sorry and worry about your feelings. Let them know how it makes you feel and be honest but also let them know that you're strong enough to take much worse than this and that you'll make it an advantage, not a disadvantage. Danielle's Dad.

Comment by Margaret Brennan on June 3, 2013 at 3:02pm

At our NAAF fundraiser yesterday I was so pleased to see all the young folks who wore either nothing or just a ball cap. So many of our young people have just stopped wearing wigs, shaved what they had left and are getting on with their lives. Parents always feel terrible when their children get sick with something. You have a disease and they cannot help you get better. I agree you need to sit them down and ask them to focus on the positive stuff - the neat people you will meet having no hair, you can now go to a NAAF conference, you can help educate people about this rare disease, you can know that you are not going to die from this, and tell them you are going to save a ton of money not having to wash your hair or get haircuts. put some humor into it and let them know you are okay. I never had that opportunity. I won't go into my entire history since it is out there for folks to read. But I always saw the guilt and pain in my parents and it was traumatic as a young kid. It effected my entire life until I finally started to find others who had AA that I could share with. You are lucky, we are all out here and available. I envy you.

Comment by Jennifer Glabus Hubick on June 3, 2013 at 2:58pm

My daughter is 9 and losing her hair. I don't want to say or do anything 'wrong' that is going to make this harder for her. I should stop asking 'are you ok?' Her response is always 'I'm fine'.
I'm sorry your friend didn't offer you the support or encouragement you deserve when you mentioned something to her. I can tell you that as a parent, there is a lot of guilt and anxiety over not being able to solve this. It's maddening. I trust my daughter is going to come away from her experiences with alopecia as stronger, more sensitive and empathetic to other people, and a confident soul. I hope...

Comment by Dgine on June 3, 2013 at 2:43pm

It actually angers me when my parents ask me "Are you okay?" But in their loving way, they're just worried about my state of mind more than the actual hair loss.
I haven't shaved yet. I have holes everywhere. My hair is so long, I look like a bum.

Comment by Colette on June 3, 2013 at 2:40pm

People get confused and not sure how to react. Don't allow it to ruin your life. I let it ruin my dream holiday to Florida, I kept wig on and didn't ride any decent rides. Few weeks ago I said why should I care what strangers think, so I left my wig at home and rode all the big rides at a large theme park, infact today I went to that park again and rode their new 14 loop coaster "The Smiler" wig at home of course. Don't allow it to rule your life, replace your hair with a wig and hold your head high, it's not easy but it gets easier.

Comment by Brenna on June 3, 2013 at 2:37pm

my mother keeps apologizing that she somehow "made" me wrong! I've graduated from some small bald spots to being completely hair-free (and wigfree!) for the past 10 years. While its not EASY, I think I can safely say it is one of the best life experiences I've had. I think of it as learning to be different with grace.

Yes - it is just hair, but its also how people see us, how they react, the stories they make up about what could be "wrong". From the random people on the bus who comment on my head, to little kids who stare openly, to my friends who tell me I'm "still" beautiful . . learning to deal with all of this with grace has not ruined my life. It has made me deeper, more compassionate, more patient, and grateful that in the end, I am healthy and beautiful - just bald!

Comment by Bonnie Fimiano on June 3, 2013 at 2:37pm

People will most likely follow your lead. My son has been bald for almost 2 years. I know he is a boy and it is different, but people do really follow your lead. It doesn't stop him from being, confident, strong and fierce! He is awesome and he does not let hair or alopecia define who his is as a person, athlete or young man! Keep your head held high!
You are beautiful!

Comment by Cheryl, Co-founder on May 31, 2013 at 2:31am

I remember my father’s reaction was similar. Many years later he told me that he was proud of the beautiful woman that I had become. It may take some time for them, it did for my family. But as I continued to grow and accept alopecia they did too.

Comment by Vane on May 30, 2013 at 1:50pm

It won't ruin your life, some people who don't have alopecia jut don't know how to deal with it. Everyone around me tries to tell me "it's just hair" but then they get more upset than i do every time i lose more. Just try to think back when you had a full head of hair and didn't know much about alopecia, it was have been hard to think of losing your hair like this. These people who don't have it don't know how to deal with it. Those who act like it's no big deal are only trying to calm you down and make you feel like it's no bog deal or even keeping you from getting too excited in case you lose it too much. And those who act sad just genuinely worry about you because they feel it must be extremely hard for you. Try not to be upset with them, they don't know any better. Instead of being upset just try to express to them how you feel. Lately i've been trying to be happy but everyone around me still acts sad, so i explained to them i'm trying not to care so much and it makes it hard when they care so much. It's still hard for them but i remind them every now and then. Remember they love you and it's like they're going trough this with you, except they're not as educated about it. So maybe you need to help them deal with it since you know more about it. I know it feels like thy should be the ones helping you deal with it but sometimes they need help too.

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