Alopecia World
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What are your greatest needs?
People who love you want to be there for you. However, they may not always understand your needs, especially your greatest needs as someone living with alopecia. This is true of a lot of alopecians as well as non-alopecians because even people living with various types of alopecia sometimes experience and are affected by their condition in very different ways. Therefore, teach us how to truly support and encourage you. Share some insight into what might be your and perhaps some other alopecians' greatest support needs.
Replies to This Discussion
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Permalink Reply by kastababy on
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I need honesty and sincerity. I don't want you to tell me that I'm beautiful because you feel you have to; rather, I want you to tell me that I'm beautiful because you really think that way. I want you to tell me that it's okay for me to be mad, upset, enraged at my alopecia, because by suppressing the full spectrum of emotions that we all feel about our alopecia and our place in the world because of it I do myself more harm than good. I need you to tell me that it is okay to have moments of self-doubt, because that shows me that you understand my humanity. I do NOT need you to tell me that I should keep my head covered with a wig or a scarf because it makes YOU feel better. Most importantly, I need you to tell me as often as you think I need it that no matter whether or not I have had hair in the past, have hair now, or will have hair in the future that I am still YoKasta, and that I will always be YoKasta, and that you love me and accept me unconditionally, flaws, hair, and all, and that you will be my friend regardless. If you feel too uncomfortable being around me and my alopecia, then say so and go on your merry way. I do not want you around to pollute others around me with your negative views about my outer appearance. I want to talk to people who think the same way that I do and feel the same way that I feel, because in this I find solidarity and draw comfort in knowing that I am not alone!!!
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Permalink Reply by Mommy on
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You rock! I love the things you say to others. You have great wisdom and your words always move me. Thank you!
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Permalink Reply by Janna on
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Coming from a slightly different perspective as a mom of a child with alopecia, the greatest needs that I have are these.
I need a sense of hope, that this will not crush my child's spirit, and that I have the means to build her up to be a strong, independant individual, capable of seeing her own beauty and that of others, at a level that is deeper than what is before her eyes.
I need her to feel loved and accepted.
Sometimes I need a dose of reality. A gentle reminder that yes, though hope for a change always remains, perhaps those children in her situation are meant for greater things, because of it. And that change is not in our timing. That the fires we are made to walk through are sometimes in our paths to refine us. And that, no matter how I'd give anything to be the one walking through it, rather than my child, I can't do it for her.
I need to be reminded that I have a place in this too, and that it's ok to have my ups and downs.
I need to be told that it's not my fault, because sometimes I feel like I need something or someone to blame, and I'm the only target I can seem to focus my emotion on.
I need friends and family and teachers and coworkers and strangers to understand and to want to be educated and share what they've learned with others. I want them to know that despite it's, I believe, misnomer as a 'disease' , my child is healthy, happy, intelligent, and full of promise.
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I love what you wrote. You have a wonderful way of capturing the feelings we share as parents of children with alopecia. Thank you!
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Permalink Reply by Jess on
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I need someone there to just listen to me. Dont try and compare it to something your going through or give me advice because, unless your experiencing this, you mostly likely wont be able to understand. Just listen to me when I need to talk and let me vent. I find thats the best support I can get, and my mom is the best at that! :)
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Permalink Reply by Carol on
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I truly enjoyed reading some of the other people's responses, especially the needs of parents of children with alopecia. As an alopecian though, I just want to be treated like anyone else would want to be treated. I want someone to provide a shoulder when I have a bad day or lend a hand when I need help just as I would want them to celebrate my victories and achievements with me. I need time to be independant too and learn for myself and at times resent offers of help. It can be very empowering to accomplish something on your own too. I've often found at times that my needs can be just as unpredictable as alopecia itself. One day I'm a rock, the next a jello jiggler! We have ups and downs like anyone else would have but we're one of the few who's extremes are set a little broader. I suppose it's a bit like dealing with an over zealous artist at times. Just promote positiveness, and smiling!!!
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Permalink Reply by Pat on
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These are my thoughts: never minimise what the alopecian feels. If he or she feels crappy tell them how bad they must feel...it validates their feelings and paradoxically makes them feel better. Don't, no matter how you feel the urge to 'make them feel better', say anything like 'I don't know what you're worried about, you look fine to me'...this doesn't cut it even though you might think how you feel about it is all the alopecian needs to worry about. Of course there are times when your reassurance is all that's needed, but when they feel insecure is not one of those times. Anyway that's the way I see it from my own experience.
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Permalink Reply by Kristen Ridenhour on
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I agree with what you said about validating their feelings. Most of the time when I get down about having alopecia I don't feel like I have the right to feel that way. I feel like I should be stronger, partly because I act stronger than I really am. When people start telling me not to worry it just makes me feel like I shouldn't be feeling that way even more. If they agree with me it's kind of like they have a greater understanding of what's going on. I have no idea if this makes any sense...
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