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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 Richard on
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i would say it is UNLIKELY to grow back and isn't it interesting how life seems to revolve around hair. Though i'm not sure how you would word the latter bit. She is very young and words are processed differently. It may seem like the end of the world to her and that's understandable.
I'm a 51 year old male however it was when I faced the truth that I was set free. Such anxiety for 9 odd years, i can only imagine what it's like for your daughter. Also we live in particularly commercial world these days and the media can virtually lie about a product and/or give false hope and this too needs to be put in it's place in ones mind - somehow.
I really pick up on the love you both have for your girl and that's so important. It will be a journey for her no doubt. Be there for her and don't dwell on the obvious.
All the very best to you. oh ..listen to her, don't always be quick to solve and fix.
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Permalink Reply by Mike on
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I have a major issue with what "Season" just said. Leave him alone! Trying to convince him that he needs eyebrows does nothing for his self esteem! Uncalled for. The fact that you are trying to push it, so far unsuccessfully, clearly shows he is resistant or he would have done it already. You're not helping. Stop throwing it in his face. Unless he wants to talk about it, leave it alone. I don't mind telling people about it if they ask, but when they start in about what I "could do" to look better, I get extremely angry and also....ouch!!
To the original poster - it is CRUCIAL for you and your ex to buck up and get on the same page about this. You're right, he's wrong. Tell him to educate himself.
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Permalink Reply by Tanya on
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Her happiness really shouldn't rely on whether her hair will grow back or not. So what if her hair grows back? She won't be truly happy because she'll never know if her hair will fall off again. The only way to be truly happy is to have an awesome self image, and be able to see that hair is not the key to happiness. She is young and you can really instill this positive confidence in her!
I think you and your husband should work on downplaying the hair loss and not view it has her life's focal point. When you as parents stress out so much over whether or not her hair grows back, it'll rub off on her and she'll think it really is the most important thing.
I'm speaking from experience. Growing up as a kid with alopecia and my parents being so concerned and stressed about my hair growth, I saw it as super important too. I took me a long time to get to a place where I see that my life doesn't revolve around having hair or not!
xo
Tanya
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Hi
I fully feel that the truth is paramount to help your daughter understand what is going on. Children aren't silly, but they do absolutely live in the moment...the concept of future is about what they want now, not how to handle things.
I remember my husband being very 'positive' at the beginning of our journey with alopoecia. I feel often men and woman have a slightly different ways of nurturing and neither way is wrong...it's just different. When I discussed this with my husband further through the acceptance of alopecia he said he felt it was all he could do...to say it wasn't growing back to him, made him feel like he wasn't doing his job (which in his mind was to save her and make this go away). I worked very hard to make him realise that by being there he was still saving his little girl.
The hair coming and going in your daughter's life will be paramount in those times of loss, but be aware that children can get a very skewed view of who they are through loss or regrowth. As often when the hair grows back everyone is so excited for them (making them feel like they are a winner), obviously the opposite happens when they loose hair...be thoughtful of this as it can make children feel very out of control and unduly judged for something they just can't control. Attention on alopecia needs to be balanced.
Hope this helps.
Rosy
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Permalink Reply by ketaki on
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6 years girl???? ohhhh ....... as a mother u have to be honest with lots of love n positive attitude too.....rite u r, ask here fact bt just watch about her mental condition too. ask her aelopecia fact n ask ....der is lots of ppl like her on earth.....May god bless u n yr kids both...
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Permalink Reply by Tovah on
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I feel that, if you are not honest (in a very calm and positive way)she will feel that she could never trust you again. I don't think it's right to give a child false hope. Tell her that there is a chance that it won't come back and when that happens, you will be there for her every step of the way and that, between the two of you, will find something that she will feel beautiful in. i.e. a wig,
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I have had aleopecia univseralis for over 40+ years. And to make a long story short. IT SUCKS.
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Permalink Reply by Larry on
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And how is this a helpful insight or contribution to the dialogue? If you are otherwise healthy and alive...count your blessings. It sounds like you have some other unresolved issues. Get a grip!
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Permalink Reply by Lisa Santer on
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I hate when people give empty assurances that any medical condition will get better soon. They do not know that, and I'm more likely to feel alone handling something scary than to feel reassured. That's not positive. In fact, at this point linking "positive" to whether hair grows feels bizarre. A few positive things that make sense to me are that
* less hair is less trouble;
* we can and do live wonderful lives with whatever baldness we have;
* we can use our experiences with this condition to learn a lot about true beauty, confidence, love, friendship, and living well;
* we can play with how we look if we want, including jokes that surprise people; and
* swimming with no hair feels great.If you and her father can really feel this kind of positive, I believe it will go a long way towards you all living well regardless of what happens with her hair.
My very best wishes to your whole family.
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Please as a mother of 3, i gave birth to, and many more children who come by...the truth is always the best. I feel if she knows what is going on she can decide how to feel about it her self, now matter how old she is. If you know it is deff. Alopecia Areata, then start off simple and go by her lead. She will have questions, answer them as they are asked, that way she can process your info as she needs. Kids are great that way, she may not want to hear you right away but if you go by her lead, she will let you know when she wants to know
Remember kids do not always ask questions at the best time, so you need to be ready when she asks, (have the info ready in your head) this way when you are in the store,car,waiting the school bus, you are ready to go.
good luck!!
tell her everything she want to know, about everything in life !!
Sue
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Permalink Reply by Lisa on
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Hi,
Yes, it is good to be positive, but honesty is always the best way. I agree with you she will learn to accept it. If this is the third time she has gone through this and she is only 6, then I guess there is a chance her hair will come back in again and perhaps she is somewhat "getting used to it". She is SO fortunate she has many support systems out there today to help her and you cope, unlike myself who lost my hair at 5 yrs old. I am 57 now and have had alopecia all my life. Fifty some years ago, it was almost an unknown. I had to struggle through my school years while having a twin who did not have alopecia, double the challenge for me.
I do not have the experience of being a mom with a child going through losing their hair as my two sons 24 and 26 have had no symptoms as of yet but I can tell you, I believe with all my heart that having alopecia makes a person stronger, more perceptive and more sensitive to most of life's situations.
It has to be hard not having your husband "on the same page" with you about this subject. With wisdom, I am certain you can figure out how to communicate positive with the reality of the truth. Prayers and faith help alot.
Good luck to you!
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Permalink Reply by Susan on
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Oh goodness, what a dilemma. I am not a six year old. The parents are separated which of course causes stress in itself but when one parent says one thing and the other parent says another is a whole other ballgame. You say this has happened to your daughter three times before? Did her hair grow back all the way after the episodes of Alopecia before? I say cushion the truth. Tell her that you (and her) would hope her hair does grow back but if her hair did not grow back…..Well….I don’t know….just talk about it. I can only imagine what it would do to a six year old girl. I am fifty four years old now. It was three years ago that all my hair came out. My hair has grown back. I was mentally prepared for either way though. I believe you should prepare your child for her hair never growing back but still harbor the hope that it will grow again. She needs to know that it will not be the end of her world if she never has hair again.
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