Alopecia World
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Wigs are ok, bald is ok, and anything in between
I am not sure if this is a rant, or what, but lately I have come into some comments that really really bother me. I have been wearing wigs for years, and when I got started, I was scared to death. Finally, I got used to it, ignored the comments from people about my hair falling out...bald spots, you name it. People mean well, but being told I am shedding isn't something I didn't know about. No, really, I already knew, but thank you so much. When I finally got used to wearing wigs, one day they just became fun, even a fashion statement. Now they are a (albeit necessary) part of my wardrobe. I can change colors and styles to match my outfit. I got past all the hateful comments and, dare I say, bullying, about losing my hair. Yes, people can be mean when they don't understand.
The cool part is that a long time ago quit being private about losing my hair, and it's been awesome the women (and men) I have met who want to talk to me on occasion about what they are going through. It gives you such an incredible way to share, and meet new people, and share inspiration back and forth.
Now we are evolving again, with people going bald on purpose, this is incredible, awesome too! Unfortunately, I am starting to get comments again from people I know who suffer hair loss (and some who don't). I have to take issue with some of these comments I get because I choose not to go bald. I have received some pressure from people, (almost?) hurtful, even close to bullying, all over again, because I want to wear wigs. Personally, it feels almost as bad as it did when my hair started falling out. Maybe it's just a self conscious trigger that is constantly trying to heal. I just wish people would leave me alone and stop trying to tell me that I am weak or closed minded because I don't want to change, I do change! Every day, sometimes more than once a day, lol.
I think women who want to go bald are awesome, and strong! But those (men too, sorry) who chose not to are walking a path that requires just as much strength and self worth. It does NOT matter to me where you are on this continuum, you gotta do what's right for you. Just remember that we are not all the same, please?
Thanks for listening. You are all just flat out amazing.
--Cat
Replies to This Discussion
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Permalink Reply by Ms Lori on
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Very well said.
I to feel great about my wigs..
Sometimes get frustrated hen they discontinue my favorite ones.
If there was a cure ; I would continue wearing wigs.
There was time I wasn't ...they will get there .
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Permalink Reply by Barbara on
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I too wear a wig. I hate it because my head is hot in the warm months and my head sweats. I don't want to go through the comments about why I don't have hair. I get strangers coming up to me asking if I have cancer when I go out in a scarf. That irks me. I want to say no, do you? I know they mean well but I personally think it's rude. Anyway, to each his own. I choose to wear a wig to keep the comments down. I would never comment to anyone about being bald, or having a limp, or missing a limb, or having blue eyes or brown eyes and so on!
Everyone is amazing and this is a very emotional condition. It's not easy losing all your hair. I always loved my hair.
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Permalink Reply by Jen on
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Gosh, won't it be great if people minded their own businesses and focused their concerns on what is really wrong with the world?
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Hi Cat
Yes it does seem to have become 'trendy' for models to have shaved their hair very short - Zara feature several models for example. However these girls have a choice, they can shave their hair off knowing whenever they decide too, they can grow it back. Some of us arent that lucky sadly, we cant choose to grow our hair back, whether we have hair loss due to alopecia, autoimmune hair loss, genetics, illness etc. I hate that i have to shave what is left of my hair very short - I mean I really hate it! I hate that my scalp hurts, that my hair is so thin you can see my scalp. I have lupus and it sucks! I have said it out loud IT SUCKS! I am not embarrassed to say that I have cried a lot - seeing the bath with hair floating around it in (I blocked the bath twice). My eyebrows are now going too. Arrghh! I am not going to lie or pretend that more than anything I would love my hair to grow back as it was before - thick, unruly and a pain to keep tidy! I havent had good luck in the wig department - I find it so hard to find one that suits me colour wise and style wise. I have bought several mistakes (expensive mistakes). It makes me sad that you have received comments/pressure about wanting to wear wigs. Thats your choice. We all have a choice, we are all different, we all feel differently about what is happening to us, and we all deal with things differently. Big hug Cat! So Cat what are your favourite brand of wigs, styles etc? xxx
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Permalink Reply by Alo-mom on
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Hello Group,
As the mother of a daughter with AU I have found comfort in always being their for my daughter's needs. I always seem to find the best for her whether it be brow pencil, eyelashes or wigs. This has made my daughters journey a bit easier. I agree that if living without wigs works, more power to you. If that was my daughters choice, then I would support that. I do find that the journey of wearing a wig can be hard until you find the one that really works for you. The same could be said about eyebrows and eyelashes. With much research I have found what looks natural for her.I would like to share this with all that have responded.
Eyelashes- Madam Madeline on line sells amazing lashes that are natural and can be used for up to 2 weeks. Ariel #109. Amazing and they offer 18 % off if you have medical hair loss. Just send them a note and they send you the code. I get them for about $2.50 a pair where they sell in stores for double that price. Please take a look at their website. I love them. For eyebrows, girls go to Mac Makeup and I find their make up artists to be kind and helpful to those that need help with hair loss. This is how my daughter learned to apply her makeup after she lost her beautiful lashes and eyebrows. Let the experts teach you. I have seen so many badly applied eyebrows because they do not take the time to learn where they should begin and where they should end, let alone the color they should be using. After my daughter lost her eyelashes, while I was out of town, I called Mac and made an appointment and told them how much I needed their help and they turned out to make her look like she did before her loss and she came out of her sadness like I have never seen. That lifted my heart up and most importantly hers. Also I have seen that if microbladding eyebrows is becoming popular. She has not had this done, but I must say those I have seen look pretty good. Again, I am not suggesting this for anyone, I am just saying that this help is out there. Regarding good wigs. she wears human hair wigs that I have designed and had made for her with a factory in China that I actually went to meet with in Quigdao.. I love this factory and I am obtaining quality hair and amazing caps for her. Unfortunately, this industry has mark ups like I have never seen before. Take the time to read about my trip to China a year ago and how I went to to 6 factories in two days. That is another story. Going back to wigs, my daughter uses synthetic wigs for exercise and running errands. I highly suggest the Rachel Welsh, all hand tied ones and also the Noriko wigs. Best place to find them is Name Brand Wigs or Wilshire Wigs. Ask for Michael the owner of Wilshire Wigs and tell him Lisa sent you. He knows me well because all of my daughters human hair wigs are cut or repaired when needed by his amazing employees. Also, he will meet any price on the internet. Please anyone who needs advice or guidance I am there for you. Giving back to others helps me when I feel sad about my daughter losing her hair. To those of you who want to know how my daughter is doing, she has an amazing boyfriend, a great job, great friends and is living her life to the fullest and the AU is not stopping the game of LIFE. She is my hero.
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Thanks for sharing! Really appreciate it! Would you mind to share the factories you visited in China? I'm curious. Thanks again. It seems like your daughter has an angel as a mom!
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Thank you for sharing! My daughter is 11 and has AA. I always worry that it will turn into AU or AT (not entirely sure of the difference, my apologies) My hope is that if it does, I can be as great a mom to her as you are to your daughter. I want her to feel confident enough to live her life fully no matter what. Your story gives me hope that we can face whatever challenges come our way.
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Hi;
I am sorry you have felt pressure to go bald.
I find you courageous. I hide under my same wig everyday. I have bought several due to my 4 years w alopecia. It hasn't been so severe lately and this summer has been amazing because I have been able to sport a tight bun on top of my head w an elastic hair wrpped tie and powder hair for my scalp. I haven't been so hot. It's been great. I am planning next year to return to kayaking because my wig won't fly off into the water.
This is a horrible condition that leaves strong women feeling emotionally weak. Anything we can use to return and get back our confidence I think it is our right to use. And I agree if you get strength by telling others and being a martyr as bald. Or moving forward with quiet strength, or something in the middle. We are all at different stages and can only cope in our own unique way.
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Permalink Reply by Dorothy on
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I too have noticed the sting of some of the comments coming from some of those who prefer to go wigless. Bravo for them, but for me, never will anyone see me without my wig on, heck my own doctor has never seen me without my wig. That is MY decision and no one else gets to weigh in on that decision. I have had AU for almost 44 years now and what I went thru can not be described, the pain and rejection not to mention the doctors who made me feel like a freak. I consider myself blessed that my husband never made me feel less than the person he fell in love with before my hair loss. He always made me feel loved more and more each day until his passing 5 years ago. Why people feel they have the right to judge is beyond me, wig or no wig to each their own, it is what makes them comfortable.
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Cat, girl I am with you! Totally understand because I feel the same! I cannot go out in public without a wig on and I think I'll never do! That is very personal and I don't feel like me if I do. I'm sorry if everyone else feel they are not supported but guess what? Everyone is different and its entitled to choose the best way to handle this situation. If going bald makes you happy and strong, good for you I admire those beautiful women that do that. If you decide to wear a wig like I do, good for us too. We have choices ladies, and its fun to change color, style, length. I feel sexy, attractive even more than when I had my own hair. Everyone has the right to choose what makes you happy, confident to handle this unexpected situation. I do accept I have a condition but I don't accept to go bald in public because I don't feel comfortable. Period
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Happy November Cat, very well said.
We all decide how we deal with alopecia, there is no one right way. If someone wants to bare all, go for it, more power to you! I admire you!
However, if some of us have decided to wear wigs, that is our own decision. I would never presume to tell you how to live your life, don't so please don't presume to tell me how to live mine. :0)
I too will never go out without wearing a wig, I am not confident enough. The back of my head is a bit flat, I was not blessed with a full occiput and a beautifully shaped head. If I had been, perhaps I would go au naturel. However I wasn't, so I have been wearing wigs since December 2013, when I started shaving off what hadn't already fallen out.
In early 2013, I lost 3/4 of my hair in three months and was finally diagnosed shortly after. I just wish I had worn a wig for our daughter's wedding in July 2013. My hair had always been triple thick, even when I was a child. At the time of the wedding, I still had enough hair along my front hairline, temples and from the top of my head and crown to have a chin length bob. However, if the wind had come up, one would have seen that from the back of my ears and the entire lower half of the back of my head, there was no hair at all. :0/
I have lichen planopilaris, a scarring alopecia. The lymphocytes attack the hair follicle, eventually killing it. The follicle then scars over beneath the epidermis, leaving beautiful, healthy skin. Yes, to me the bald bit is beautiful. What I am not so crazy about is the remaining hair, because as the follicle is under siege: one has plaques of itchy, dry skin which looks a lot like lichen, hence the disorder's name. The follicles are ringed with the plaques, which spread out between all of the active hair follicles. My scalp often feels tight and painful, it turns red and is very itchy wherever the LPP is most active.
I am not one to broadcast it, but lately I have told a few strangers about having alopecia.
I had surgery last Friday and just popped the cap over my wig as I went into the OR, instead of trying to stow it somewhere while I was unconscious.
When I awoke in recovery, as I was chatting with my recovery nurse, Sherri, a wonderful nurse and kind, genuine person, I reached up to adjust my wig because it felt wonky. Sherri apologised and said it had slipped so they had tried to put it back on. I whipped the wig off, which took her aback momentarily, then when I said that it had been put on upside down, we both got the giggles. <I am chuckling at the memory, right now.>
I explained why I wore wigs and she shared that she had gone bald twice; once because of cervical cancer treatment and again when she'd had pancreatic cancer. You'd never know it, her hair is beautiful, thick, and down to her waist. We had a nice long chat and then I went to my room. That night, after trying to sleep with it on, I took off my wig and kept it on the bed beside me, it looked like i had a long haired teddy bear with me. I was in hospital after all, and nobody looks their best in that situation. :0D :0D
Yes, I have alopecia, it can be upsetting, and sometimes a nuisance, but it is not fatal. Yes, it can affect our sense of well being. However I refuse to let it rule my life. Life if precious and I prefer to live mine in the kindest, happiest, healthiest way I can manage, for myself and my family. I am blessed with a loving family and friends.
There will always be ignorant and cruel people in life and many of us will, alas, come across them. I have, however, I refuse to let them win. So, I just smile, think 'FO' at them, and walk on. I don't usually swear out loud, unless under duress, but I find just thinking the words at the idiot in question, is definitely a stress reliever. ;0D
As to my wigs, I enjoy wearing them and now know what I look like as a dark brunette and a redhead. I am actually a honey/ash blonde but have yet to find a blonde'ish wig that I like. Any suggestions? I was never interested in coIouring my hair, but I sure have fun swapping my wigs. I have one real hair wig made with a wee bit of my hair, plus hair donated by my son and my daughter's sister-in-law. I don't wear it that often because I want it to last. I also have three synthetic wigs. I am often complimented, and sometimes I will tell the person it is a wig. They are always surprised because it doesn't look like one, or what most people think of what a wig looks like, anyway. Thankfully for us all, wig making has come a long way. My son is growing his hair again, to "give Mum a new wig". As I said I am blessed, for which I will always be eternally thankful.
Sorry, hope you're not asleep, after this long winded tome....
Hugs to all.
~ Kate in Canada
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