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Honesty about alopecia
I would like to ask a general question, and get your opinon, to all alopecia sufferers. I just had a huge row with my daughters father about how to deal with our daughters Alopecia.
She is 6, I want to take the honesty approach. I tell her all, and don't hide anything from her. He tells her everything is fine and her hair is growing back, which it isn't. He thinks we should be "positive". I think we should be honest. (we are separate).
She lives with me, and everyday I see her hair falling out, and everyday she sees her hair falling out, so how can I tell her that her hair is growing, when she is losing it at an alarming rate?
I believe that if I am honest with her she can prepare herself and get used to the idea, it is the 3rd time in her life it is happening.
What is your experience, he thinks I am being mean by telling her the truth.
My stress levels are sky high right now.
Replies to This Discussion
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Permalink Reply by Fidgety on
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Hi
Thanks for the message, is there a centre in Milan? i live about 3 hours from Milan.
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Permalink Reply by kastababy on
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Honesty is ALWAYS the best policy when it comes to explaining this to your child, especially if she is the one who is affected by the condition. While I understand where your daughter's father is coming from, and while the first instinct of any parent is to shield their child from bad things, doing so in this instance will be doing more of a disservice than help.
I lost my hair to alopecia when I was 4. I was 6 years old when a doctor took the time to explain to me what was happening. Knowing what was happening to my hair and why went a very long way in keeping me from being panicked or stressed when I found another bald patch, and also armed me with knowledge of my own condition, which I then used to explain to my classmates and anyone who asked why my hair was gone or why I wore a wig.
The time will come when your daughter will have to answer questions about why her hair is falling out, and neither you or her father will be there to answer questions on her behalf. If she is to navigate her peers, her neighbors, and anyone she comes into contact with successfully with the minimum damage possible (and please note I'm not speaking it into existence, merely painting a realistic picture), then it is vitally important that she knows what is happening to her.
You are absolutely correct in your reasoning - if this has happened multiple times already, then I would take a guess and say that it's past time you explained this to her.
NAAF has some great materials to assist parents in explaining alopecia to their children - I would recommend not only going to their website, but also engaging your child's dermatologist to help you as well.
I hope that everything goes well for you - I'm confident you will make the decision that is in your daughter's best interest. Please keep us posted!
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I believe honesty is the best policy. Children get their vibes from their parents. So if you don't make a big deal of it, neither will she. tell her there is no known cure, but it may or not come back for good, or for a time. Help her to love herself with or without hair. It's just hair. teach her to be proud of herself and all her accomplishments.There is nothing she cannot be or do. Hair has nothing to do with it. There is a lot of worst things out there than hair loss. People who would taunt or tease her are not worth having as friends. teach her to hold her head up high, smile and be confident. She belongs to a very special group of people whom God has blessed and has great things in store for. She is a member of an elite group. Hurray for us. God bless.
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I think it's better to plan for the worse and if it grows back, awesome! But, if it doesn't she will already have begun to prepare for it. That's the approach I have had to take in order to not live in constant hope that it will come back. It would probably help too if you can find out how other parents have talked to their young children. I'm sure it's difficult to explain to such a young girl why her hair is falling out, especially when there aren't many answers.
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Permalink Reply by Shannon on
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As a teacher and an alopecia sufferer, I like the honesty approach. I think that simple, honest statements are the key (afterall, none of us knows when hair will fall out or grow back). You didn't mention how much hair she has lost, so I'm unsure how obvious it is to others. If it is obvious, there will also come the issue that someday, someone at school will ask her why her hair looks like that, or why she gets to wear a hat in class (if she chooses). It's much easier for children to answer simply, "I have alopecia and my hair falls out." Children will invariably ask, "When will it grow back?" If she can answer simply, "I don't know. We'll have to wait and see" young peers can accept that as a response and move on to playing :) We have students with all kinds of different issues in the school(s) where I have worked/do work (as a special education teacher) and we go to a lot of trouble to build inclusive, caring environments for all of our students. There are lots of resources that could be recommended to your school if it comes to the point where her school can support her, depending on how severe her alopecia becomes. Your daughter will benefit from having the support of both her parents - honesty and a positive outlook. Maybe you could convince your husband to accept a little more honesty if you agree to reinforce some of his positive attitude. Good luck!
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Permalink Reply by Linda on
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Continue to tell her the truth. As she can see it. Yes, the hair is falling off. Yes it might leave for long (or forever). But also tell her that there is a chance it might come back. Only a little. But at least a chance. Most importantly, make her feel she is loved in all ways. No matter if with hair or not.
When I was same age, my mother tried every medication to cure AA. Yes, it was good somehow (but didnt work). But with our without her, I would have wanted her to just love me the way I was. All the research on medication against AA made it even worse for me to deal with AA. Like: "Oh she cant stand me with loosing hair."
It might be hard for your daughter's father to understand. But "nice talking" is much worse. At the end the girl might really not have hair. So Daddy was lying. Tell him bout it.
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Permalink Reply by Sharon on
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Hi there I think you should follow your instincts and always talk to your daughter and give her the facts as you know them. We were always honest with our daughter and talked to her about different avenues of "treatment" suggested to us. She was 8 when alopecia first rared it's head and we tried all sorts of things. In the end she was fully included in all decisions as this was her body and it was important for her to have a say and be informed. I really feel for you right now it is such a difficult emotional time. Hang in there.
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Permalink Reply by Vamppp on
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I agree with all of your responses so far.....honesty is the only way to go. Your daughter is very young which may be a blessing in disguise. I did not experience alopecia until I was in my early 30's and it was devastating as an adult and extremely embarassing as a single woman. Your daughter does not have to face any of these obsticles in life yet. She is at an impressionable age and will most likely accept it and be able to deal with it. Kids are amazingly resiliant, more so that most adults. I totally understand your stress level right now but you need to take care of yourself and also remain calm for your daughter. Perhaps if you introduce her to the idea of wearing wigs now in a very fun way it will make things less stressful when the day does come that she will need to wear a wig every day. I have to say that I am still not use to wearing a hairpiece (I dont need a wig, just a top hairpiece) and cant wait to rip it off when I get home from work. I had to deal with my hair loss issues fast and didnt have much time to think about it or reseach hair options. Dont let that be the case with you and your daughter. Be prepared now and above all things, do not give her false hope. As bad as alopeica is, things could always be worse. I have to keep thinking that or else I will go crazy. You and your daughter are in my thoughts and prayers!!!!!
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Permalink Reply by Marlina on
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I have had alopecia since I was 11. I'm 23 now, engaged, went to college on an Athletic scholarship and now attend law school.
You need to be honest with your daughter about alopecia. Explain to her that although it seems unfair, it is not a handicap.
Alopecia may seem like a bad thing. She may get teased in school or feel different from other children. I did sometimes. But your daughter will come out as a better and stronger person for having to face diversity and also realize that life is filled with challenges and it is not always fair. It's a hard lesson to learn at a young age.
Alopecia was a blessing for me. There are much worse things in life than losing your hair and I have realized that something as trivial as hair is not what defines me as a person. I think that although it will be harder to explain because she is so young, you don't want to give her false hope. Furthermore, I think honesty will help your daughter understand in the future that things like hair are NOT what define you as a person.
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Permalink Reply by Cindie on
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I vote for "gentle honesty." As an adult, I reflect back on things that happened to me as a child, and I despise the adults for lying to me about them. There is a saying in the African American community: "the truth hurts for a little while, but a lie hurts for a long, long time."
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I am for the honesty approach too. My daughter is 11 and was recently diagnosed 2 years ago. We tell our daughter that if you educate you will have a stronger support circle. You will not always be able to help her and if she has a strong support system they will be able to help her through difficult times. We also tell our daughter if someone knows and still mistreats her then she has to weed out her garden---to make room for the flowers. We all have something but together with the help of friends and a good support system those trials become a bit easier to deal with. I hope I didnt just ramble...lastly men do take this differently/harder I really dont know the right words to explain, but he is dealing/greiving/coping the way he knows how, be patient with him and encourage that both your jobs is to raise your daughter with a strong sense of herself, coindfidence and self esteem :)your daughter doesnt need to see the added stress between you and him. If you would like to talk I would be happy to keep the conversation going :)good luck
Hugs, Jackie
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