As non-alopecians, we joined Alopecia World because we are supportive of alopecians' efforts to effectively cope with their hair loss and make the most of the lives in spite of it.

Indeed, some of us are already an integral and, hopefully, inspirational part of the life of someone who has alopecia, while the rest of us wish to play such a supportive role.

But what have we learned from our experiences of supporting alopecians? What are some insights that you have and which the rest of us might find helpful? Please tell us what you know in order to help all of us grow. :-)

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I found that when my daughter lost her hair, she needed some validation for the loss and grief involved, a sense that yes her hair was gone and that is sad. This helped her to accept this reality, hopefully feel understood and move towards adjusting to her new reflection and lifes new challenges for her self esteem and grooming. Sadness needs to be passed through with some tears, and later the smiles and confidence builds. She reached the stage that one day a lady complemented her "hair colour" and she told her that it was high maintenance, with a smile.
Great point, Lynette. In this pro-hair and lookist world of ours, the last thing one should first say is, "Get over it (quickly); it's just hair!" Indeed, to ignore an issue with the intention of minimizing its importance or impact can be interpreted as the height of insensitivity.
When my daughters AA was at the point she could no longer hide it and needed a wig, A felt it was important to let her be angry, vent, cry etc.... I felt it helped to agree with her when she cried and said "its not fair", or that she hated the situation. Also being realistic and factual with her helped, we talked a lot about the worst and the best that can happen. And when you think you wont be able to ever "accept" Alopecia or get over the sadness and anger, give yourself and your loved one time. Even if you cant imagine how or when (I couldn't), time, information and the people on this site do help.
Nicely stated, Amy. Time itself doesn't heal all wounds, but the acts of healing and support that we perform over time sure can help. :-)
The first NAAF conference my daughter and I went to (she was 12 and is now 27 so it was a long time ago!), I kept hoping she would be confident enough to go without a wig. I was sure she would be happier if she could accept herself as she was. I was talking with another mother after a session and she told me that she wished her daughter would just wear the wig they'd bought for her. She was sure it would make her daughter happier and others would accept her more easily. It was then that I had my first "Aha" moment as an Alopecia parent. First, there is no all-purpose fix for the problem. We feel the pain of our children so acutely that we convince ourselves there must be a way to make it easier for them...if only they would do something they're not doing now! Second, that while support is crucial, the Alopecia journey must be travelled by each individual in their own unique way. It's hard to watch the struggle and not to offer opinions. But, as friends, parents, family members, co-workers of people with Alopecia, that is OUR Alopecia jouney. Support, advocacy, encouragement, listening, and more listening.
My daughter was diagnosed with AA when she was 12, she is now 15. Over the summer she became AU. She said that worrying about the possibility of losing all of her hair was worse than actually being bald. We went wig shopping when her hair started getting really thin in early summer and she was completely traumatized. She swore that she would never wear a wig. A few weeks later she changed her mind without any fanfare. She has a few wigs now in different colors but still prefers to go without. She played varsity softball this summer and fall wearing a ball cap to keep from getting sunburned. She is also a drum major in the band and a cheerleader for basketball. She bought a strawberry blond wig for cheerleading but says she may just go natural. I learned that we need to let her lead and that I shouldn't go into Mom mode and try to sweep in and fix everything. We just need to stand back and support her.
Something I think that would help people with alopecia is if more and more would be publicly bald so that other people who have alopecia would go publicly bald and realize bald is beautiful. I believe then being bald would be more socialy acceptable to this blind earth. I think all non-alopecians should support not wearing a wigs.



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