Alopecia World
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Noticing people noticing
My daughter is 3 and a half years old and she has no hair on her head. It's not a problem for us. She isn't embarrassed, or sad that she has no hair. She only likes to wear hats outside or to dress up. I'm proud that the transition has gone so smoothly. She lost her hair in a matter of months, and now it's just a fact of life.
However, since she's lost the last of her hair, I've noticed people noticing, and acting very different. A Dad at KMart told me "good luck with everything." I was so confused, it took me a couple minutes before I figured out what he meant. He meant with my daughter, because she doesn't have hair. Because everyone assumes she has cancer. Then about a week or two later we were out at lunch and found out that someone anonymously paid for our lunch. Which was great... But I feel guilty and annoyed that we that we are getting this attention. Is there a better way to handle this? Should I just appreciate it?
Replies to This Discussion
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Permalink Reply by nancy on
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I suppose this is the generous side of human nature your experiencing. without doing one-on-one education everywhere you go you might have some opportunities to slip some folks a little write up about alopecia but when it's not appropriate then just remember when people
do something nice for you it makes them fell good too. A good chance to teach your daughter and the rest of us to pay it forward!
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Permalink Reply by paula on
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i think people are usually genuine..... and act from the heart. alopecia is still unknown by many.......i say....accept the kindness albeit uneducated. perhaps a reply could be......thank you....alopecia is still baffling! maybe the kmart dad wold go home and google alopecia! xx stay strong.
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Permalink Reply by tracieB on
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My 7 year old has had alopecia since she was 1. So we have experienced this many times. If I have a chance I will tell them that no, she doesn't have cancer she has alopecia. Usually they are relieved and gift her anyway. I do noticed that when we are out and about strangers will look at her then at me. If I am smiling or relaxed, they relax. I really no longer catch the looks, but my friend took my daughter out one day and commented how many people stare at her. My daughter also commented on this, I told her to smile at them. Now that shes older people seem to be more rude about it. A couple weeks ago a man walked by and said Is that a boy? I said no, shes a girl. Then the jerk said " well, she looks like a boy. A clerk at Sallys told my daughter she had pretty eyes, despite her condition ugggggg.
Its gonna get harder, people are unpredictable
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My son is 12 and we recently attended our first support group meeting. At that meeting several mom gave me these little "business cards" that they made for their kids. They all say something to the effect of..."thank you for your concern I am not sick I just don'the grow hair it's called alopecia. For more information got to www.naaf.com" we recently ordered them for my son too. Plus when they get to school.age they sometimes get tired of having to explain it to all the kids at school. So you can just hand them out when u get comments and you are doing them a favor by educating them too!
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That's a great idea a.bateman00. Thanks for all the feedback. I'm sure I'll adjust, and I know Rosie has a life of this ahead of her. It's all really new. And while I appreciate the kind thoughts, it is just really uncomfortable. Thanks for all the input.
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Permalink Reply by Kimberly on
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just smile and move on... people will look at everyone and everything, and yes, they assume cancer with lack of hair, but thank the Lord, she doesn't, and that's what I would say if anyone comments. I, myself has alopecia, don't have a child with it, and thankful they haven;t had to go through what I have. In fact, I prayed to God for them not to have it, just let me continue with it. I'm ok, been a long journey of 34 years now, WOW! time has flown. I have learned a lot about myself throughout the years. I am truly a blessed person, with a great family. God is good!
My best to you and God Bless!
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Permalink Reply by Tyler's Mom on
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My son is 5 1/2 and has been completely without hair since he turned 3. People always notice, and like you we've gotten meals paid for and random comments from strangers, though never any negative comments, thank goodness! I also feel guilty about the free meals, because obviously they think my son has cancer. If we're told who has paid our bill we will usually thank them and tell them a little about alopecia. But like TracieB said, the more relaxed you are about the situation, the more people seem to pick up on that and follow your lead. Like her, I barely notice people looking anymore and when I do notice I simply smile at them.
Good luck!
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My son is 13 and hasn't had hair since August of 2014 (universalis)....he lost it the same month that his same-aged cousin was diagnosed with terminal brain cancer. So, my son was healthy but bald and his cousin was dying but had all his hair. What an irony that was! My heart remains broken with the loss of my nephew on November 3rd, 2015 and on only sparingly few occasions have I worried/cried about my sons hair.
We get stopped with the cancer comments a lot...but because of our family tragedy and because we are so open about it as a family we just reply in a chipper voice, "Nope, not cancer thank God....just Alopecia." That's it. Period. They can google it if they want but most of all our happy tone makes the difference and they smile and tell him how handsome he is. I usually chime in to say that "Plus,he's a badass"....and he is. Athletically superior and all the boys respect him...so no one has anything negative to say about him. One of his friends called him Penis Head, and another called him Uncle whatever-his-name-is-from-the-adams-family but he could have cared less...and he is at the age where penis jokes are funny so for some reason he thought that was a compliment. I know he suffers inside at times, but his confidence is key. He has girls that talk to him and call him at odd hours (which I would normally be mad at) but I'm glad to see that he is still successful with meeting people.
All in all, the pain we feel when we dwell on the problem is huge. Not going to lie. It sucks and it breaks my heart that he has this problem and is stuck with it. I've cried so hard my eyes have had burst blood vessels....but in perspective to my sweet nephew, I can't be all that sad. I can't dwell all that much. Must love and move on.
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Permalink Reply by Renee on
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LOL! I like this. People are nice to you and not rude and ignorant. But I get what your saying. Alopecia Areata in its most severe form still needs more public awareness. Even if they knew she didn't have cancer, they might still be sympathetic. I hear how many with cancer think losing their hair to chemo is the worst part. But YOU KNOW that she is really healthy and not sick or dying. I wish I ran into more people like this. I mostly get rudeness and stupid comments. I guess because I'm an adult now (even though I was age 12 when I lost all my hair).
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Permalink Reply by Shelly on
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This happens to me quite a bit. Now I just accept it & inside I chuckle and think, "if only they knew I'm as healthy as a hourse"!
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Hi Shelly, hi All! Although I am 54 I can very well understand all these problems. I can hardly work in my job (I am commercialist working in the dental field with instruments & Co.). Dentists just feel to be doctors but they are not. Thei are really rude and make pretty remarks. They feel the difference between my previous hair and my current wig and they say it. Nice! But I simply cannot work in such surroundings. Terrible. And I am pretty healthy, running for more than an hour without stop, making cca. 10 km. Running is my only entertainment, I can run alone without having anybody to clear differences between cancer and alopecia, etc. I rally hate meeting anyone, going into small shops, people feel sad because of my "cancer". As the wig is part of my working clothes, I do not wear in my free time, on weekends. I wear always caps, But it is not normal, they believe it is cancer. Thus I cannot live a normal life, I cannot go swimming, to the beach, nowhere. I am alone, just my little dog can accept things around me. That's it. I hate it.
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If u are interested in seeing an example of those cards let me know and I can email you a picture of ours.
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