I was out with my daughter yesterday and she had chosen to wear a buff band as a cap, so fairly clear there was no hair in there. A stranger came up to us and said something like "Good for you, you're such a trooper!" We both stared at her. I was trying to figure out what on earth she was talking about and whether she knew my daughter somehow. I asked what she was talking about and she clearly didn't want to say, but as we were walking away she said, "Both my parents had cancer." I was really startled. I both didn't want to be rude (because she was trying to be nice), didn't want to mislead her, but also didn't want to share information that my daughter considers very personal.
Any thoughts?

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Roberta,
I understand your situation. It happens to me as well, and each time, I have difficulty finding the words. One woman in my yoga class often folds her hands, bows, and says "healthy healing to you." I've not been able to find the words to let her know I am healthy and that I have alopecia. While I am open about my alopecia, there are moments where words escape me.

In the future, respond how you feel comfortable. You don't have to explain anything to anyone. Talk to your daughter about it and how she feels about it. Again, let her know that she doesn't have to share any information that she isn't comfortable sharing. If you want, you can simply respond she doesn't have cancer. Hair loss occurs for multiple reasons, not just cancer or alopecia.

Hope this helps!

Thanks Megan. We do need to talk about it. Resounding with "thank you, but she doesn't have cancer" seems like a good neutral response.

Every Sunday when I go to church, I cringe because all the elderly ladies tell me I'm looking so good and I'm so strong and I've been through so much. I've told them multiple times that I don't have cancer, but they never get it.

Wow, that must be really frustrating. I wish hair loss wasn't seen as a mark of chemo. Then there wouldn't be this potential for misunderstanding. At least the ladies in you're church seem caring - if clueless.

I once had a man with very long healthy hair chase me down in the street to tell me he would donate his hair to me and go on to tell me how brave I am. I thanked him for the gesture and explained it wasn't needed. I told him I wasn't sick and this is just the way I am. The gesture was very nice but I was also very insulted. I made a decision that day to acknowledge I am a pioneer of this openness with this condition and I would have no choice but to educate people whenever necessary, it can be extremely frustrating but I always do it nicely, I do it so that my oldest son (who also has au) at my age may not have to do the same as myself and people will just think it's normal. We also had an incident where we were at the mall and my son was looking at an rc toy and the man felt so sorry for my son that he was insisting on buying the toy for my son, I told him no and explained, and I still don't know if he believed me. what can you do? In the end you have to do what you think is best for your daughter, best of luck to you.

Thank you. I think with a girl child we are less commonly out without a wig - this was my first experience with this. I want to educate, but also have to respect my daughter's comfort level. Is your son pretty comfortable with others knowing about his au?

He wishes he had hair but it doesn't get him down. If someone points out he's bald he says yes I am and if they ask why he says that just how I am. It never really bothers anyone, I remember one time my husband took Mason to the store with him and the whole time there was this little boy who couldn't speak just following him around the store, completely bewildered by Mason, finally his dad was apologizing when my husband asked if the little boy wanted to touch Mason head, knowing that Mason would be okay with it, and the little boy did and thought it was really cool. So, now when people are really interested he usually tells them to give him a lucky rub on the head even adults sometimes and when they see he's not sick and just like everyone else they forget about it. He's well adjusted and fits in well. He is usually shy for the first few minutes of being around people but warms up quickly. I think because I have had AU his whole life it's a little more normal for him and I try to expose him and show him people with all kinds of differences that are not sick and live their lives normally and that helps him a lot.

It sounds like you have done a wonderful job helping him adjust. And I'm sure having a well-adjusted mom with the same thing helps. I'm hoping someday my daughter is more comfortable with other people knowing about her hair loss, but it's hasn't happened yet.

It will happen for her one day as long as she knows no matter how she chooses to handle it that mom is there for her, accepting her. It sounds like that's what your doing. May I ask how old your daughter is?

This is a tough one, I don't have a child with AA but have it myself, unfortunately to most people a bald head signifies Chemo, and Admittedly I've been on the other end of that, where I see someone who looks healthy but bald like me, I want to ask them if they have Alopecia, because I know so few face to face who do, but I stop myself because they may be going through Chemo, not everyone going through it looks or feels sick. I don't ask because it is personal. I know this woman was trying to be kind and supportive to you, so I would just let it go if that feels better, or quietly take her aside and explain briefly, I have no doubt she would feel awful for not knowing what Alopecia is but she would learn something new and never do it again.

First thing, does your daughter understand why she is mistaken for a child with Cancer? Children with Alopecia have their own struggles, but if they understand the whole idea that they are compared to Cancer hairloss it eliminates one part of the battle. On the other side, I have to explain to my 7 year old every day that I DO NOT have THAT disease because she assimilates hair loss with a "bad disease." I have had Alopecia all my life..I almost felt people had a sense of confusion when they learned it wasn't Cancer... all I say is, "no, not Cancer, auto-immune disorder." It's none of their business...and they walk away feeling like a jerk, lol!

This really upset my daughter who is 6 and has AU, when she first lost all her hair. She knew her grandfather had cancer and went through chemo. She didn't want people to think she was sick. Especially her friends and classmates. I made sure she really understood her condition. Now she takes the lead if anyone tells her to be strong. She is quick to explain that she has an autoimmune disease that causes hair loss. She explains that it isn't painful,that she is healthy and she isn't sure if it will grow back or not. If people are really interested, she loves to throw in that she had injections when she was first diagnosed. Sometimes she is just not interested in talking about it and secretly tells me, I bet they think I have cancer. People do offer to buy things for her all the time. We always say thank you, but that isn't neccessary. Occasionally someone offers something and we take it. On our vacation it was hot and this older boy came up and asked my daughter if she would like his hat so she didn't get sunburned. He said it was small on him and he was going to buy a larger one anyway. She accepted it and wore it the whole day. Which is really surprising, because she usually hates hats, but she was blown away by his kindness. I found it to be a really sweet gesture. It is really frustrating that it seems like we are always having to give her medical history to everyone, but I try to remind myself that they are concerned. I have even had a hard time bringing it up with her friend's parents. I don't know how many times people have asked how many more treatments does she have? Unfortunately most hair loss is from chemo and not Alopecia, so we are in the minority. People just assume. She should be getting her wig in a couple of weeks. I thought I would be more excited, but a part of me is so proud of how well she has handled being bald that I hope the wig doesn't make her hide behind the hair.

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