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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 The Bald & Beautiful on
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So sorry you're having such a hard time, but it's really important that both parents work together even if they disagree. I personally believe you should be honest as you have been doing, but in a very gentle approach, as I'm sure you're doing. Since this is the 3rd time this has happened it stands to reason it's not going to all grow back and if it did, it may just fall out again, so there's a good chance she will have to deal with this again in the future. I think it's best to be prepared and be able to cope with things so that with time it becomes the norm. Try discussing this with your ex when your daughter isn't around so you guys can hopefully work your differences out. If that is too much, maybe see a counselor for assistance. I know it's expensive sometimes for counseling, but it may definitely be worth it, I know you're daughter definitely is a priority just like all our kids are.
Best wishes to you and your daughter.
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Permalink Reply by Larry on
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You should be honest and tell her how little is known about her condition and that it could come back but maybe not. There isn't a doctor who can give us a real answer so you can't and shouldn't make any promises. Many of us live with this and live a mostly normal life. She will be fine but shouldn't be given false hope. Get her a cool looking do-rag...it helps me feel like I'm "covered".
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Permalink Reply by Debbi Fuller on
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You are totally, absolutely right. Your husband just wants to hide the truth to 'spare' her and himself the pain and drama but obviously, you can't. If this is her 3rd bout with it, you already know that this is a disease which often recurs. There is no cure at present and she needs to be helped to come to terms with it as soon as possible. Honesty is the only way. Are you also sending letters home with her schoolmates so that everyone is aware at school? The teachers need to watch out for her and make sure that no one bullies her. Her friends should know so they can look out for her too. He is sticking his head in the sand. He needs to step up and be a father. That means doing the hard and the right thing. You can't always protect kids from reality. Teaching her to face it head on is the only way to go.
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Permalink Reply by Ashlee on
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As someone who didn't start dealing with Alopecia until I was 16, it is hard to imagine having someone else make the decision for how best to handle the situation. On the one hand you don't want to give your daughter false hope, but on the other hand you don't want to worry her over something that she won't really understand how it will effect her life until she is much older. Personally, I think that honesty is the best policy and doing your best to give your daughter all of the information and tools necessary to be able to deal with it as she grows will be the best bet. Instilling her a healthy body image and doing your best to give her a positive outlook will do wonders for her self-esteem no matter what happens with her alopecia. Also, if you have access to support groups in your area with kids around the same age as her, that might be a good thing to get involved with. The more she can see that she is not alone in this the better. Also it might be good to get her father involved with some other parents just so he can have some better perspective on the situation. He isn't wrong in wanting to be positive, but it's a little naive and I can understand your frustration with the situation. I hope this helps!
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Permalink Reply by Patricia Gerbaud on
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I quite agree with GROWCHEMOME and Larry : BE HONEST. But of course tell her it MIGHT grow again but nobody can be certain of it so she must be prepared exactly as you said. Of course I'm sure you told her you love her with or without hair, that she's lovely inside and that is what matters. As she gets older she might interested in having a wig, that can be fun to choose one for a little girl.
All the best to both of you.
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Permalink Reply by Bernadette on
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Why cant you do both? Honest & positive. There are lots of positives that come with alopecia. Those positives are different for everyone. I dont know too many 6 year olds that like getting their hair washed & combing out tangles. Its also fun to try different styles & color of wigs. They do make wigs for kids if she's interested. There's also lots of cool hats she can wear. I would definitely be honest with her. She will figure it out eventually.
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Hi
I am positive and honest, I am factual but don't make false promises, I already promised we would find a website with some funky hats and scarves. Trouble is her father doesn't want her to have a wig, and he think I would be cruel. He doesnt live with it day in day out, and I am looking at suitable wigs for kids. if that is what she wants, and she tells me it is!
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Permalink Reply by kastababy on
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Are you the primary custodial parent? (I'm guessing that you are from the context of the questions you're asking.) If so, I completely agree with what Bruce said earlier - first and foremost, don't let someone who lives outside your home dictate what goes on inside it. I would also take your cues from your daughter. If she is comfortable with who she is and the situation as it stands, down to wanting to choose hats and scarves, then by all means go for the gusto - unconditional love and acceptance from both parents is what is going to help your daughter more than anything, especially at this age.
As she gets older, your daughter will develop the expectation for how men are supposed to treat her as an adult based on the relationship she has with her father *now*. Based upon your concerns for how he would treat her if she were to start wearing a wig or other head covering, I would suggest being prepared to stop him from seeing her if he in fact does become cruel. It's better to nip issues like that in the bud early on, before they become ginormously huge problems later on and irreversible damage is done to her self-esteem.
Perhaps your ex would benefit from a frank conversation with your daughter's dermatologist. The harsh reality of alopecia is for many of us, alopecia becomes a lifetime condition. Some of us blessedly have a single episode where all of our hair falls out and never comes back, and we adjust. Other alopecians go through a lifetime of cyclical hair loss and regrowth; never truly comfortable with the situation, and always fearful that the next time the hair falls out it may be permanent. While it's always best to be hopeful and optimistic that the hair may grow back, it's also wise to be realistic and prepare your daughter for the worst case scenario, which is permanent hair loss and a lifetime without hair. Consider it a case of under-promising and over-delivering: if her hair grows back and nothing else happens ever, then that's a wonderful thing. But if it falls out and never comes back, guess what? That's a wonderful thing too - because hair is superficial at best, and doesn't define who your daughter is. What defines her is her personality, her brain, and her heart - and that is something, if nurtured carefully, that alopecia can *never* take away from her. And that, more than anything else, is something your child's father needs to understand above anything else; that the seeds he sows with his daughter now he will reap in spades later.
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Permalink Reply by terri on
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I think your instincts are correct. Be honest, nothing to be ashamed about. She needs to trust her parents to give her age appropriate truthful information. If you are okay with her alopecia, she will most likely be fine with it too. He is probably having a difficult time coming to terms with his daughter losing her hair. Dad's like to protect their children and fix problems. He can't fix this. Sounds like he needs a hug and a good cry, but she will be better off if you are both on the same page.
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My daughter is 6 also with alopecia. We are honest with her, but we do not scare her with the honesty if that makes sense. We tell her her hair is falling out but we don't make a big deal about it. my cousin has it too, so i tell her about my cousin. We just explain that's the way God made her and she got it from me too - my genes. I do tell her it could grow back, but could also fall out again. So far, it doesn't bother her at this age. I'm hoping by handling it this way now, she'll be able to handle things better as she gets older. Since she was little I've always had a sign hanging in her room saying you are beautiful just the way you are...I don't want her to forget that.
Good luck to you!
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Hi
I understand that this is a difficult time. I truly believe honesty is the way to go. Your daughter needs to start accepting herself hair or no hair. Also she needs to be able to trust those who surround her. In this case her family. Be hon3st. It's been 3 years since I was diagnosed with alopecia universal during that time my friends used to tell me "don't worry your hair will grow back" . The truth is t I don't know that. Although I have always been positive I needed to prepare myself for the possibility that it might never grow back. Right now it's actually slowly growing back which makes me happy and hopeful but I don't obsess over it.
I wish you and your family the best of luck. Mari
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I think back when my daughter was the same age and going through a similar situation.It is extremely challenging for us as parents to keep positive and lead by example that hair is superficial and instead concentrate on her becoming an independent, confident human being that has more to offer that just having beautiful hair.Good positive role modelling is the most important thing. Your daughter will probably be aware and pick up subconsciously on the tension. Hope is always important but it needs to be based on reality. My daughter is 23 YO now and has grown up with alopecia universalis, and I am proud to say she is a confident,capable and even more beautiful who has accepted her alopecia and this has allowed her to be the best she can be.Accepting and not obsessing about can only make us emotionally stronger. And as the adults is its our job to support the child to fulfill their potential. Good luck to you and all your family.
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