Comment by Renee on June 20, 2014 at 6:01pm

I say do what makes YOU feel comfortable... I still find that a great amount of people still have no clue as to what alopecia is.  I have had alopecia since I was 27 and I am now 47..  I started off still having some hair left and now I just have a hair line and some hair on the top of my head..  I find myself asking God to please give me some of my hair back, it does'nt have to be long.   I love short hair :).  I  still get frustrated a lot. But I know I have to go out into the world everyday.  For me, I don't feel comfortable going with my wig..   Do you what you feel is right for your situation..

 

And for Kat.  I feel the same way you do also.  I didn't feel feminine any longer without my eyelashes and eyebrows.  So I taught myself how to apply eyelashes and draw in eyebrows and until they came back about 1 yr later...  I'm sure you know that there are tatoo artists that can tatoo eyebrows also...         

Comment by Kat on June 20, 2014 at 6:08pm

Renee Thank you

Comment by Bekk on June 20, 2014 at 6:54pm

I have alopecia universalis & apart from a brief period in my late 20s when my hair grew back I've been bald & proudly so. At 20 the loss of a huge amount of thick long curly hair (as well as thick Italian eyebrows, lashes etc) was immense but once I'd sagged the straggly bits the only logical option for me was bald. The only people I knew who wore wigs we're drag queens & it didn't feel right for me...despite lots of pressure from doctors (the same drs who kept encouraging me to treat the condition with dangerous drugs like cortisone etc) to conform to societal norms - no one else ever questioned it, not family, partners, employers. In 20 years I have found people on the whole to be supportive & non judgmental about it. Sure people stare it's natural - I actually prefer open questions (the kind children are so good at asking & get shushed for in public!) as it's most uncomfortable when it's the elephant in the room & people are 'too polite' to ask questions.

Luckily I hav a nicely shaped head tho - it suits me!

Comment by Jessie on June 20, 2014 at 7:26pm

I am 45 and have had alopecia since I was 5. when I was little it was just spots so the rest of my hair could cover it. About age 27 it all fell out and never came back. I wear a wig and have ever since. it s a personal feeling. I do feel prettier when I wear it , but my family is like whatever you want. when I have gone on vacation I often will just wear a scarf or hat and I get the "sympathy " looks because they assume you have cancer. I can usually ignore this, but sometimes it reminds me of why I wear my wig. When I have seen young women, or old in public without I give a huge smile and always greet them. I want to give them a big hug and tell them how much I admire their strength. so..all this being said, if you are strong enough with how you look with or without then go with that. I admire your strength!

Comment by andrea t on June 20, 2014 at 7:48pm

I understand your discomfort--very similar to my feelings. It's easy to feel like a fraud since you know how the "real" you looks and people who find you attractive might not, if they saw you without hair. For me, it has always hampered my life and I think I would have been better off had I had the nerve to go wigless. At least then I would be more self-accepting and others would just have to deal with their own reactions and feelings and either get over it, or not. It's very complicated and always lingering in the wings is the feeling of duplicity, of misrepresentation. Social norms, especially those you either don't agree with or conform to, or both, can be constricting and by hiding, I've never dealt with the many issues baldness raises.

Comment by Fuzzless on June 20, 2014 at 7:51pm

Hi Nicola,
Don't be hard on your friends and family.  I am sure they only want what is best for you, and may not realize how their comments affect you.  I saw this video the other day, maybe it will help you - what she says toward the end is so very true for all of us. 

Comment by Nicola on June 21, 2014 at 1:39am

Thanks everyone for all your wonderful feedback <3

Comment by KFlame on June 21, 2014 at 6:15am

I would go with what you feel best. I always wear a wig outside but in my home I never have it on. It often feels like the same relief I get taking shoes off my tired feet. I went to visit my dad for a few days I kept my wig on in his home and I was not sure if that was for his sake as it can be I feel a shock to suddenly go from hair to bald, or my own and often felt like just taking it off but didn't. Almost like I was trying to respect his feelings.

My fella once said he preferred me with the wig on rather then off but as we live together I'm sure he is used to seeing it off now. I don't think I could be happy wearing it for his sake in my own home.

Comment by hoofpick on June 21, 2014 at 1:24pm

I am newly diagnosed, when the hairdresser cut most of what was left of my hair off, it was not much, just a few straggly long pieces, I had in the front of my head and the back of my head, it looked hideous, but it was my hair and I wanted to hold on to it. So when the hairdresser cut it I was shocked and sad.   I wore a baseball cap all of the time.  But when I got my real hair wig, a wig that looks pretty close to my color and cut.  They cut it all off, not bald but very, very short.  I had been coloring my hair for years....it is all gray now, so with the little growth that is coming back, only the front bangs growing, most of the rest is not growing, not falling out, but not growing it is completely gray.   So I have light gray with bald spots on my scalp.

 To the wear the wig or not question, I have worn the wig or wigs, I have three, I wear the wigs out away from home.   At home I go without a wig or wear a cap when working outside.   I wear a cap around people other than my close family members around home.   I am more comfortable with just a ball cap to tell the complete truth, I find the wigs uncomfortable, itchy and hot.   Its summer also, but I also feel pretty self- concious in the wigs, I get really paraniod if people stare at it too long, I wonder if they think it looks weird, do they know its a wig or are my gray bangs  sticking out, or its crooked etc.......I’m thankful on one hand for the wig, because it makes me look more normal, I am not comfortable talking about myself, so it evades the questions or looks I know I would get without the wig.   I ride horses when I ride I wear my ball cap with the hair.   I have been braiding the hair to keep it cool and off my neck.   I am new to this disease, I am a shy person, but I also know what I like and don’t like.   I feel as time goes on, if it grows some more, it looks man short, I wish I was a Hallie Berry type that could pull it off, but I’m not, so if it grows more, I will probably get it colored again, to my previous haircolor before going gray.   And stop wearing the wig, even if it is not the long hair I had.  My hair is very slow growing if at all, I am grateful its not all falling out again, but I am also with some pretty large bald spots on top and sides.  

I think its a matter of choice for us, either you are very comfortable with your self and you want to go without the wigs or you are more comfortable with the wig, its YOUR choice.   There is not a rule that says you have to do either.   Its what feels good to you, its what you want to do, what others do is not your concern.   I have to say, I don’t get as hot as I used too, with my long, very thick hair.   I will probably never grow it long again.  If I’m that fortunate to ever get it all back.  The wigs are nice because you can take them off and on.   Change styles, it was fun looking at the wig shop at all the different colors and styles, take it on and off.   Without cutting and deciding you liked or did not like the look on you, waiting for it to grow back.   I say to myself it is not a disease that keeps me from still going and doing what I love to do...................

Comment by hoofpick on June 21, 2014 at 1:32pm

PS. Nicola, If I looked that great without my wig, I would go without a wig, you are beautiful!!!!   

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