Alopecia World
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Everyone always thinks I'm going through cancer treatments
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Permalink Reply by BLee on
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I know people mean well but sometimes they invade in your space! I had a lady come sit next to me on a plane when my husband went to the restroom. I really wanted to tell her to mind her business but my sweet self just couldn't. Sometimes it's too invasive. I was going to Belize to get away from everything and yup they just barge right into your business! That's why I wear hair most of the time just so people don't bother me. Sometimes you just want some privacy!
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Permalink Reply by Fiona on
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I go totally 'topless' (no wig) now most of the time. I get people come up and give the supportive cancer comments, but I also have had a couple say "is it in support or ...". There are people out there who shave their head to show support for a friend with cancer. The latest one was "what are you fighting" and my naughty self wanted to say "ignorance" but I resisted!! LOL They do mean well, and yes it is tiresome answering and explaining, but such is life I guess. I had a booth recently at a dog show (I make show leads) and thought I should have a sign out about Alopecia!! I guess we are the education front!!
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Yeah I think sometimes I should just tattoo alopecia on my forehead so I don't have to say no I don't have cancer and no it will never grow back at least cancer patients grow back their hair people just have no clue the struggle we all face. 26 years now for me!! How many years for you?
Blee
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25 years with AA and 1 1/2 with AU. I feel stronger though with what I have gone through. You could as easily say, well at least our hair loss does not kill us. Plenty of cancer patients die! Its all in perspective!!
You are right, most folks have no idea what we face, the self doubt, the feeling ugly etc etc etc. However if you accept it, you become stronger. I went out the very first time with no wig, on my motorbike to a local tourist town. No one knew me there. I just took off my helmet and went topless for the very first time. No one looked twice!! I treated myself to a pastry and a coffee in a cafe and sat at a street table watching the world go by. Riding my motorcycle helped me go topless. You can't wear a wig under a helmet and taking the helmet off and trying to quickly put on your wig with no one seeing - well, its not doable
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Yeah I do thank God that I am not sick! But I do struggle at times. I ride on my husbands bike! I usually wear a bandana under my helmet! I'm not brave enough to go topless yet! I'm sure it's freedom though!
Thanks for chatting!
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Permalink Reply by BarbaraK on
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LOL Fiona If you would have answered "ignorance" I would have laughed
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Permalink Reply by Rose Marie' on
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Hi
As frustrating as this may be...I think most are being thoughtful and kind and even though it is very intrusive into your life it does give the opportunity to explain what is happening. Aimee's response is a good one. :)
Alopecia always has issues that must be managed, whether you wear hair or don't wear hair.
If your choice is to not wear hair...then you have the response to that choice to manage down to a place where you feel comfortable. (I realise the choice is one you would rather not have to make....but alopecia only gives those two choices - cover or not cover) I can understand the frustration, but if no hair is the most comfortable alternative for you I'm sure you can manage the responses around it to a place where this is not so frustrating.
At one of the Naaf Conferences I went to, a mother had created a little business card that her daughter gave out to people when they asked about her alopecia - mistaking it for cancer etc. It said something like....thanks for your care, I am not sick, I have alopecia etc. It worked very well for the wee girl and may be helpful for you if you just get tired of explaining.
Rosy
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Permalink Reply by Lori-akaMimi on
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Oooh, I like the idea of the business cards, Rosy!
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Rosy, thank you for the suggestion. I can add it to my business card for awareness. Great idea!
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We took my little bald beauty to IHOP one evening. She just turned 6. After dinner, the manager came with an ice cream sundae "for the brave little girl." I knew what he was thinking, but, well, she IS brave... and she got free ice cream, so... ;-) I just ordered her a t-shirt that that she picked out. It has a cute sock monkey holding a blue ribbon, and it says, "Alopecia...can't keep me down!" It's adorable AND offers an explanation! I found this shirt on Amazon - but there are tons more at cafepress.com. (Oh, PS: one of the parents @ her gymnastics class asked if she had leukemia. When I explained that it was alopecia, he said HE had experienced total hair loss from alopecia (it had all grown back) - yet, he STILL jumped to the conclusion that she had cancer! smh)
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Wow even one of our own alopecia people still jumped to conclusion of cancer! Awareness is up to all of us!!
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