Alopecia World
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The Cancer Thing
Is it just me who just gets this, but every time I visit somewhere Im not known, I get bombarded with kindly women saying 'How is the treatment going (meaning Chemo)'. They get quite put out when I explain that it is Alopecia, as if its my fault that its not the big C.
On one trip it happened three times in a row, the last women, got a stern replay to go do some more research.
I even get Chemo patients coming up to discuss 'our' so called mutual fight.
Iv looked at T shirts about Alopecia Awareness and they are really expensive.
How do you deal with these kind but rude people? I dont think Im gonna be nice to the next one.
NB Iv had Alopecia for 30 years and AV for about 5.
Replies to This Discussion
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Permalink Reply by Becca on
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I hear you.. I am sick of this too.. I don't know why everybody assumes this....I would just say it's alopecia I don't have cancer. I am just allergic to hair...
-Becca
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Permalink Reply by Mary on
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I get it all the time. There are many blogs about this on AW...you might be able to find them. I have made up cards that I hand out that explain and give my YouTube links. I get asked what I'm fighting. I have women with cancer who call me sister.
You know what? It doesn't bother me so much any more. It mostly makes me feel GLAD that all I have is Alopecia. And, I feel good because cancer patients or survivors tell me how positive it makes them feel to see a bald woman uncovered in public, even if I lost my hair for a different reason than they did.
I've had T-shirts made on CafePress online very inexpensively - you can have whatever wording you want. Mine say: "Yes, I'm bald...get over it!" You could get one that says "Thanks for your concern, but it's not cancer..."
In answer to your question, Becca, the reason that people assume we have cancer is because the ONLY bald women they've ever seen are undergoing chemotherapy. The only way that people will stop mistaking every bald woman for a cancer patient is for MORE OF US to go out in public bald! It's really very simple. It's in our control.
The 2d Annual National Bald Out Day is Saturday, July 17, 2010. It sounds like you're already bald in public, Patricia. I encourage you and others to join the AW National Bald Out Group and start planning an event where you live, in the US, or in other countries ("National" can be any nation!) Imagine the effect on public perception if on that ONE day, all the bald women went out in public bald. Think about it. No way people would assume we all have cancer...just as they don't assume all the bald guys have cancer.
End of rant. ( ;-)
Mary
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Permalink Reply by Andrea on
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I've had it a time or two because at my worst before treatment kicked in for my Lupus, I looked very very sick. At that point I was able to explain that it wasn't cancer it was Lupus.
Now I don't look sick and with about an inch of hair, I just look trendy. In this area that's a risk though. I live in a high concentration of Amish, Mennonite and Bretheren. Women all wear their hair long, so I still stand out.
Anyway, I guess most of the people are concerned, for which I'm thankful. I saw a video here of a little girl who printed up business cards that said "thank you for your concern, I don't have cancer I have alopecia" and a blurb about what alopecia is.
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Here's side one of the business cards I print (centered, with nice lettering):
It's not cancer, it's not contagious
IT'S ALOPECIA AREATA
An auto-immune disease affecting 2%
of the population.
Thank you and have a nice day.
Here's side two (video titles are in italics):
Check out my videos on YouTube
about Alopecia Areata:
Living a Bald Life
Announcing the National Bald Out!
National Bald Out 2009
I always carry a supply, particularly at gatherings where I'm meeting a lot of people. You can buy double-sided printing stock for the cards at office supply shops.
Mary
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Permalink Reply by Dee Connelly on
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HI, I grew up with strangers thinking this about me. I wish I had the courage then to say to them I have Alopeica and then explained it to them. Dee
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Permalink Reply by Leslie Riches on
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I always think up great responses at about 2AM--hours after the incident! Recently--at Pottery Barn--I saw a set of "business" cards. Very high-quality thick nice paper. Printed on one side in small quiet letters they said, "stop talking". And those would work for so many occasions!
In some ways I feel a sisterhood with cancer patients. They carry a load alopecians don't carry. And alopecians carry a load that cancer patients don't carry.......
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Permalink Reply by BaldGirlsDoLunch.org on
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I give thanks and gratitude to the cancer "movement". It is not very long ago that not only was the word cancer not uttered in a normal speaking voice in public, it was not spoken between doctors and patients. Doctor's pretty much operated on the principal that patients and families didn't want to know.And physicians had no training in how to have the conversation. It was a slice in time.
"Cancer" was not printed nor spoken by mainstream media.
We have that movement and First Lady Betty Ford to thank for breaking down that long standing social taboo and making it ok for the word cancer to be uttered in public and become part of normal conversation.
This means a lot to me personally. What the Bald Girls Do Lunch network strives to do among our many goals is to facilitate a new generation of young people, parents and adults who are able to say "Alopecia" in public without embarrassment. Like George Carlin tried to tell us all in his own inimitable way is that it's just letters that form the words and there is nothing to fear from using words.
Changes take time. I believe that the cancer movement is just one in a string of social evolutions. Being able to utter shamelessly the word Alopecia is a first and necessary step. If I had a child today with alopecia I would say, " This is my daughter Consuela Francesca. She's just so awesome because she has alopecia. And which teacher did you say your daughter has this year?"
Thea
I invite you and your friends to stop on by to follow my blog at www.BaldGirlsDoLunch.org for beauty, science and all things alopecia in between.
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