Replies to This Discussion

Permalink Reply by Return_life on May 10, 2017 at 10:29pm

ignore them...
I know it's is hurtful but they will continue. we can't control what people say or think.
I had severe nail pitting being AU and a cousin was insisting that I am not having enough calcium... hearing this in front of 10 other people. gotta stay calm and smile

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Permalink Reply by Swirly on May 20, 2017 at 4:12pm

Ugh! It just frustrating. 

Doing that in front of other people is so mean.

My eyes tear up when people do this. I can't help it. I don't think smiling would help. 

I could start deflecting. 

Other person: Have you tried  ___ to regrow your hair. Me: Let talk about your weight. 

I'm kidding... It's what I want say. XD

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Permalink Reply by Return_life on May 20, 2017 at 11:04pm

well you know we do not control our environment. it could be a friend, a boss, people do not realize sometimes how they affect others feelings.
We all had to deal with very difficult situations like this. going in public being AU can be stressful. when I receive mean comments I act like it's doesn't bother me. but deep down I am crush... if I go in a party I can spot a few people whisper to others about my condition.

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Permalink Reply by Swirly on May 24, 2017 at 7:51pm

For whats it's worth, I'm sorry for every rude whisper, look, and comment. 

You're right we can't control our environments. Which is probably why I'm less social now days. 

Just imagine if we commented on everyone else physical defects. XD 

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Permalink Reply by awooga_ on May 25, 2017 at 10:38pm

Exactly I wouldn't dream of commenting on people's physical appearance be it weight, hair, how they look it's just not a nice thing to do, because it's none of my business. 

I think the problem with alopecia is people might think you are unwell so feel they have to ask. 

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Permalink Reply by hagster on May 29, 2017 at 8:31pm

I don't know whats in that book, but as someone new to this total hair loss thing, I'd welcome the information - if it were helpful.

I have AU, granuloma annularae, vitiligo and folliculitis. Needless to say, my skin from the chest up is a mess, especially my scalp. The last 7 months have been a total learning experience as to wigs & keeping them on, alternative headcovers and keeping them on. For instance, slick poly or silk scarves will not stay in place - so I've gone to strickly cotton. Then you have to know how big a scarf needs to be, most flattering way to wear it, how to tie it, how to add fullness to the crown, etc.

I could go on & on. Anyway, I would be appreciative of a gift that could help me sort some of these things out.

Finally, if a stranger has the need to comment, good or bad, I use it as an avenue to tell / inform about alopecia. I wear my scarves (proudly) most days and luckily have never had a disparaging comment.

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Permalink Reply by JellyBeanToes on June 25, 2017 at 11:42pm

Hello. I'm a hat & scarf girl myself.
Frustratingly I find it difficult to find hats (usually too big) & scarves I like & I simply cannot make them look good on me. I want to look kinda 'trendy' but all the people I've seen that I think look great with a scarf or a hat have hair showing. I only know two or three different ways to tie a scarf.
I'm now wig shopping.
I've been doing a crazy amount of wig research & I think I'm going to have to buy a wig from a shop where I can try them on before I buy but so far the prices are way too high.
PS. I hate it when I see a wig advertised where the picture doesn't accurately portray the wig, sometimes they just pin a picture of a celebrity, you just can't trust the pics & utube reviews that I really like are not from Australia so the delivery fee is not worth it in the end.
Sorry to ramble here on your reply, I'm new here.
PPS. Did it take you lots of practice to tie your scarf like that? I attached some pictures of self wearing scarves, it's the best I can do, it's not something I'd ever choose to wear if I had a full head of hair.

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• 20170521_182117.jpg, 799 KB
• 20170601_174724.jpg, 569 KB
• 20170601_173428.jpg, 426 KB

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Permalink Reply by Swirly on June 5, 2017 at 12:38pm

I don't think it's snarky at all. 

If we gave ourselves the same permission as these people it would go like this: 

Person with acne walks up. Response: Hey, did you know stress causes acne? 

Persons overweight walks up. Response: Did you know stress causes weight gain?

Person with chipped tooth walks up. Response: Did you know stress causes you to grind  your teeth? 

I could keep going but I'll stop. 

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