Alopecia World
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How do you tell people?
Hey all...so, I have told people about my alopecia in the past, but I am at a new school and I would like to tell people but I feel like I'm so awkward when I do...does anyone have some good stories about how they told people, the words you used, etc.?
Replies to This Discussion
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Permalink Reply by BaldGirlsDoLunch.org on
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"Have you ever heard of alopecia areata?" works for every situation from distant to intimate.
Said as a point of inquisitiveness.
I find it goes about 60-40
60% of people have no idea
40% know someone currently or knew of someone tangentially( classmate; friend of a friend, etc) at some time.
Thea
www.baldgirlsdolunch.org
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Permalink Reply by Eric W. on
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Hi,
I'm soon to be 34 and for many years I just went under the guise of shaving my head when it came up at work or when I was dating........I started a new job about 2 years or so ago and said I'm tired of BSing people. So now when they ask, I just tell them flat out. I wish I would have told people the truth years ago. I look back at my elementary, middle and high school days I think most people made fun because they just didn't know what was going on.
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Totally true. I meet countless people all over the country who wish they had told other people sooner what alopecia is and what it isn't. None that I know have regrets about telling others. The only regret is not doing it sooner.
The inner turmoil about " how it will go" and the primal fear of rejection loom large in our imaginations and are normal responses to the situation. Initially. But the reality is that other people are overwhelmingly relieved to know.
Especially with children, the families and kids that do best are the ones who are open and informative from the start. When others guess and wonder, weird reactions come out.
I also find it's more helpful to say "my hair doesn't grow " rather than to say "I've lost my hair". It's a subtle change-up, but it makes the dialogue into " my follicles don't work normally to get the hair up and out of the scalp" easier to say in a sound bite.
Thea
www.baldgirlsdolunch.org
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Permalink Reply by Natalie on
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When I first started my new job I wore my wig the first few days and then wore a headscarf. When I came to work that day I said "No, I don't have cancer, but in case you are wondering why I am wearing this scarf, I have alopecia," and then proceeded to tell them about it. Everyone has been very receptive and kind about it. I think people can tell if you are comfortable, and if you are comfortable with it and talking about it, then they are, too.
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Permalink Reply by Mary on
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Right, Natalie. The more at ease you can be about it, the less of a big deal it seems to be to other people.
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Permalink Reply by Georgie on
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True. The more at ease you are, the less of a big deal it is. Nicely said, Mary.
AA was something nobody really knew about me. And I'm sure there have been plenty of raised eyebrows in the past as to why my hairstyle on any given day was the way it was. I'm a 37 year old mother of two girls....and wearing barrettes isn't something I felt comfortable with....like I just copied my daughters' hair styles. Whatever.
For me, people are finding out about my AA after asking me about why am I gluten-free. And it's freaky when I embark into my autoimmune discussion with people: low thyroid, anemia, hair loss.....and they are like what? Hair loss? Because so many more people are telling me that they too know of someone else in a similar situation. Even the word "autoimmune" is finally making sense to people.
I used to keep AA to myself. But I can't now. I'm hoping that the more people know about it, the better understood it will be. Alopecia shouldn't be a word people don't know.
Good one today: I was telling a friend about Thanksgiving dinner....and that I would be making a gluten-free crust for the pumpkin pie. *sigh* She said, "That sounds delicious!" And this comes from a woman who is a pediatric nurse. I don't think she really understands "gluten-free." That being said, I hope my pie crust will be delicious anyway....heck, at least the filling will be delicious.
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You're so right, Georgie - "Alopecia" shouldn't be a word people don't know. All it takes is more of us being out there.
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Permalink Reply by Rachel on
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Don't make it a big deal! If you don't make it a big deal, nobody else will either.
I'm often questioned if I have cancer, and I always make it a point to inform the person/people about alopecia.
I've switched schools/started new jobs many times, and I've found that if I am confidant about myself then nobody really questions the fact that I don't have hair.
Accept and love yourself, don't worry about what other people think =)
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Hi Rachel,
I agree 100%. It's the self confidence that evolves over time and develops in us that sets the stage for other people. I find it completely normal that most people assume that bald people are in chemo therapy. A person would have to be living in a cave for the past 25 years to not make that connection.
It's not very long ago at all that the word cancer was not spoken by media, by families, even by doctors to families. It was taboo. Culture changes and the result of the phenomenal social change in talking about cancer has created super-awareness of it. I don't see it as a problem. I'm glad the pendulum has swung this way for more societal enlightenment about terminal diseases, cancers and the like for those who want more open discussion of their situation.
Thea
baldgirlsdolunch.org
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Permalink Reply by Natalie on
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Hi Jessica;
I cant tell you the best way to tell them, but I can tell you that once everyone new, I felt so much better! It wasn't a secret and I could laugh at myself and it didn't seem like such a daunting thing to me the.
I tell people all the time, if someone has their hair in a nice style, i will say, i would love to do that, but I cant, I have a patch where i suffer with Alopecia....and open the conversation that way.
Or if you're feeling brave, show people your hair, go with it, and explain it, some people with surprise you in good and bad ways, but it works, well it did for me, but everyone is different.
xxxxx
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