Alopecia World
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I feel like wigs are dominating my life
The title says a lot, but let me elaborate.
First, wigs are an extra bill. I spend so much getting custom wigs that I'm not even happy in, and have to buy a new one about every month because they start looking more unnatural than a wig should after that time.
Every single person on this site wants their hair back if they lost it, myself included. I get emotional when I'm putting my wigs on or taking them off, and some days I have to fight back tears seeing my bald scalp and my "hair" on a plastic head. I'm so paranoid as well about the wig falling off, and would never want anyone to see me without it and my eyebrows/fake lashes. Even on a site like this, one with many people in the same boat as me, I won't post pictures of myself without my wig on. I never take them, because I'm afraid someone might stumble into them and, in a few years, I want to remember me with my wigs on that look somewhat like my old hair than the bald woman I hate being in reality.
I've had to limit myself a lot in what I do. I don't go in the water at the beach anymore, and if I go at all I put a hat on and just read while I sweat under my thick brown wig and resist the temptation to itch at sand that gets under the front. Wind is a nightmare-- I've actually had nightmares about a strong gust of wind taking my wig with it, and my hand is always on the front of my wig whenever it starts. My wig doesn't have lace on the back, and I don't want someone to see something that suggests that the wig on top of my head isn't my actual hair. I rarely play with my son anymore, because I'm afraid he'll tug at the wig and he's never seen me bald.
The self-consciousness is killing me. After every period at the school I teach I go to the woman's room with my makeup in my purse to redo my eyebrows and the makeup around the wig.
I just want my hair back.
Replies to This Discussion
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Permalink Reply by BLondie on
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Dear Kristin,
I use a "Wig Grip Band" when it's windy. It feels like a headband and the tightness is adjustable. It recently held my wig on while on a roller coaster! I also wear it in a convertible plus it's great for keeping a slippery scarf in place when I'm not wearing a wig. The link to a helpful video explaining its use is below. It works because of the "nap" of the stretchy, velour fabric that it is made from - smooth in one direction and more bristly in the other direction. If you sew it could be made inexpensively. I've seen less expensive versions online but I bought mine from the store in the video. I hope this helps a bit.
Best wishes to you.
PS: I had my eyebrows and eyeliners tattooed last year. That was life-changing for me. I absolutely love them. I just "pop" my wig on in the morning and I look like my old self - only better because my hair never looked that great to start with!
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People say that we are still the same person inside, but I disagree. Alopecia has changed me. I am now fearful and insecure, not the social and outgoing person that I was. I feel like a fake wearing a wig. I hope that someday I will accept it and feel comfortable in my own skin.
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that makes me feel so sad... I agree with you that I'm not the same inside. I've changed but I think for the better. I get that insecure, shameful feeling of wanting to hide but I think I'm better off now because I can rise above it, be brave, be confident, and use it as a reminder that it's whats inside that counts.
being brave doesn't mean you feel brave. I hope you can feel comfortable in your own skin too.
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I am still in the stages that you are in - I have put my life on pause because I keep thinking my hair will grow back. I still have some hair but it is rapidly falling out now and I am losing my eyebrows and eyelashes. They first thought I had lupus and now maybe I have Lichen Planus too as finally they are listening to me about my itching body and scalp. So it looks like I have alopecia where the follicles are damaged for good. I have spent so much money on wigs that actually arent really me. I live in the UK and the wig shops that we do have havent such a vast choice as those in USA. They all seem to stock the same, and the colour choices arent like the hair I used to have. So I basically buy something that the shop assistant says look great on me, and when I get home I realise that no it doesnt. I used to have brown/blonde highlighted hair, and finding wigs in that colour that dont look fake is hard. Its depressing. I see people on here and Facebook pages with wigs and think wow they look fantastic, why cant I? Also wigs hurt my my irritated scalp and sorry to all those that say to hell with wigs go bare, I cant.................I just look awful bald. I have a sticky out ear and I am in my late 40s. Along with my hair loss I do have dry eyes which are red and sore, my skin is very dry too. I think it is absolutely great if you have a wonderful face, great shaped head etc and look fab without a wig, but that doesnt work for me. So I hide under a hat at all times when outside. I started losing my hair nearly three years ago, and I am still shocked that I am still losing it. I think I have a few months left before it has all gone (including on my body). My condition isn't just losing hair, it comes with other problems too and I find it all so hard as not only do I feel unwell, I look unwell. I dont want to be different, I just want to me the same me and it looks like that isn't going to happen and I find that very very hard to accept. I am not as strong as many of you here.
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Hi Vicki, I am in my early 60's and 18months into AU. I have been diagnosed with Sjögren's syndrome, another autoimmune disease. I understand the problem with wearing wigs where some do not look narural. I find the natural hair wigs look the most natural although the cost can be prohibitive and they need more care. I do not know of anyone else with alopecia, the US does seem to be better equipped for support groups. I live in Essex, perhaps if we didn't live too far away from one another we could meet for a coffee which would be nice. I wish you peace and strength, and hope things improve for you.
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Hi I am based in London, it would be great to talk to you. Are you on Facebook?
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Hi Vicki, yes I'm on Facebook full name Helen Haynes, with a picture of my cat (sort of beige colour). I hope you can find me on there and that we can have a chat. Helen
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Permalink Reply by Jiggybear on
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Just sent you a friend request. Dealing with medical issues, possible that it’s Sjögren’s....I have a couple questions if you don’t mind. Thanks so much.
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Kristin, Finally another teacher with AU. I am a third grade teacher, feeling just like you. I straighten my wig at lunch. I have worn the same wig all year so the children would get used to it.
No one knows I am bald at my school. You have given me hope.
P.S. I wash my wig once a month, it will last longer. Do not brush.
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Permalink Reply by Cheryl, Co-founder on
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Thanks for sharing your feelings and thoughts with our community. From the response to your sharing, I can see that many are being touched.
I have been meditating on an article that I read recently, in fact, I have gone back and re-read it a few more times. The thing that stuck out most to me was that the writer explained that transformation comes through discomfort. I will say it again because it is important, “transformation comes through discomfort”. She went on to explain that there is always friction between what change you want and the less demanding space you find yourself in. In order to transform, we need to sit in that uncomfortable spot. Learning to stay and do the uncomfortable allows us to not be controlled by that which brings us discomfort.
I sense that you are sitting at that doorway now. Stepping into discomfort does not have to be a full-blown leap; it may never look like discarding your wig. But a small step can give you some breathing room, for example by allowing others to know about your alopecia without seeing it. I remember when I started telling others about my alopecia and allowed my family to speak of it to others as well when needed. I believe it was a relief for all of us; my family no longer had to make up things to conceal my secret, it started to dismantle the shame. I recall when my young niece found out that I had alopecia and have been wearing wigs all this time. I discreetly lifted the corner of the wig in front of my ears to show her that I was indeed wearing a wig. Doing just that little step gave me the freedom of saying I was hot or that I needed to scratch my head or reposition my wig in front of them or no explanations needed when I put on a hood to ride a roller coaster.
I learned a very important lesson from that little step. It was the beginning of me finding a way to enjoy the things I enjoyed before alopecia. This is when alopecia starts to fall into the background when you can get back to living your life.
In your case, I believe it is finding a way to freely and completely play with your son. I can 1000% tell you that your son would rather that you share that part of your life with him if it means that he gets ALL of you back. For his sake, I believe you need to take this important step. You will also be teaching him an important lesson that he can fall back on throughout his life when he is faced with adversity. You will be teaching him by example to work through it.
I too need to break through another area of my life and the realization that I already have the skills of sitting and acting in discomfort and just need to tap into it has personally bought me hope in this new challenge.
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