Alopecia World
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Big impact on life
I dealt with AA since 4th grade and it was pretty hard. After the first few years, most of the time I was lucky and it wasn’t too noticeable, but then I got AT - no eyebrows, not many eyelashes and wear a wig.
I don’t think of myself as a vain person, never wore much makeup or spent much time on my hair etc. But since getting AT, I’ve barely gone swimming, scuba diving (which I love) much less felt open to dating. I don’t want to go to a gym or take fitness classes where is sweat.
Maybe some of you have managed not to let it have such an impact? I don’t feel comfortable going bare headed. It’s hard and continues to have a big impact. I’d appreciate your thoughts & advice.
Replies to This Discussion
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Permalink Reply by Spuddy on
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Hello,
Mt name is Danny and I my immune system went nuts 4 years ago and at the age of 50 I lost every single hair on my body.
I feel you struggle and I can only partially fit into your shoes. It is easy for me to tell you that you need to get to the gym as this saved my life as I was once viewed as Dapper Dan with the most beautiful hair.
I did have to get tattooed eyebrow to look normal, but the key was to expose myself to all.It is still so very hard. I want to add you As a Spuddy Buddy.
If you can [MESSAGE] me I would like to tell you about Club Spud..ok...Cheers Dan
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Permalink Reply by JeffreySF on
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Club Spud!
Sounds like fun!
On the more serious side. We all know how hard this disease can be on an emotional/psychological level.
Hugs,
Jeff
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Permalink Reply by Flbeachchic on
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Elle,
Everything you're feeling is valid. I don't know if it's something you'll ever completely accept but try not to allow it to keep you from living life to the fullest. What's helped me is finding people with alopecia on Instagram that post lots of tips on wigs, how to wear a wig to work out, etc. There are also a lot of motivational videos on YouTube. I feel like they've given me the courage to really LIVE life despite my diagnosis.
P.S. cry when you need to ❤️
Take care,
Michelle
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Hi Elle,
I fully sympathise with your sentiments, I have a very similar background to you both in terms of the activities (I worked as a pro scuba diver for many years) I participate in and my general lack of not bothering with makeup etc. Since I was 9 I have never had eyebrows or eyelashes (despite my hair coming back and falling out for the last 30 years).
The way I deal with it is like this:
- I have semi permanent eyebrows tattooed on, they're expensive but totally change your face for the better. Unless you can be bothered to pencil them on everyday (which isn't easy!) then for me it's the only option and I have never regretted it. I got them about 15 years ago and now it really shocks me when I see pics of myself before with no eyebrows...it's a huge difference.
- I wear a bandana (or buff) when diving or doing any other sport. Even when my hair has grown back I still wear a buff because it keeps my hair from getting tangled in the mask strap! I used to wear my wig doing sport and it was awful, I would sweat like mad. Banadana is still a bit hot but no where near as bad as the wig.
- I actually now wear a band with my wig and wear a topper, the band means if I do happen to do something active then it's not gonna get in my face, and in addition to that it's removed the anxiety I get from the kids looking at my hairline when I am teaching (I am a high school teacher now).
- I wear a swimming cap when I go swimming so that one is pretty easy.
I really get where you're coming from in terms of the impact it has on your life, don't get me wrong - even with the above it still makes me really sad that I feel like I always have to have my head covered up. The few times my hair has grown back I have felt so lucky to be able to jump in the water, or run around care free without having to consider in advance what I should wear on my head. I consider myself a fairly free spirited person however I have never been brave enough to bare my head in public and I will continue to be frustrated by the pressure I put on myself to hide my alopecia away from the world. However I hope the above helps a little bit and I wish you every luck with your journey.
All the best,
Marie
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Permalink Reply by Sarah Reade, MD on
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Elle, I was in my mid 50's when my hair started to fall out. It started with just two round patches in the back. Because my hair was long, I could pull it back and cover the bald spots. As time went on, more and more bald spots appeared until finally I had AU. It was awful. I wore scarfs, but the eyelash, eye brow problem made me very uncomfortable. I pretty much stayed home most of the time. I found some head covers but all that happened was the number of times I was asked how my cancer was while waiting in line at the grocery store.. One day a kind intentioned man asked me how I was feeling. I was in a crumby mood and turned to him and said, I have learned it is incurable!!! This is true, but it was a nasty response on my part. I have since found a wonderful and kind tattoo artist who has applied eyeliner around my eyes do even though there are no lashes, it is less noticeable. I also have eyebrow tattoos. His partner specializes in high quality wigs. I have bangs with the style he has chosen. He cuts the wig while it is on my head. I leave there every time feeling less conspicuous and more normal looking. It has increased my self esteem exponentially. I would urge you to find a reputable salon. Forget Merle Norman-their wigs are ugly! !! Best wishes, Sarah Reade, MD
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Hi there Elle,
I really get where you are coming from. I got AU in my 40's (about 6 years ago) and found it very very difficult at the time but with the support from the ladies in Alopecia Ireland and my family (especially my fantastic daughter) and friends it really got me through. At the time I tried to wear wigs but I just could not because I found them very uncomfortable and like a hat on my head so I decided to go bald and show the world who I really was. It was awful at first because I thought everyone was looking at me but later discovered that was not the case when I was comfortable as myself and being bald.
I was married when I lost my hair and the only people who made me feel ugly being bald were my husband at the time and his family, constantly asking me why I didn't wear wigs etc. Thank God they are now my ex husband and inlaws, my ex actually said to me one night that I had "an ugly contorted face", oh yes, he knew how to hurt me so badly. I found out a few years on he was having an affair and so I got rid of him thank God and I have to say since I am single and only surrounded with people that I love and care about in my life I have never felt happier.
I consider myself lucky because I had a life while I had hair and know what that is like. I genuinely think we all have to go through a journey and some people can accept their hair loss but unfortunately others cannot.
Some days are better than others and I won't say I am always 100% confident out in public being bald but I am much happier nowadays. I have met men who have been attracted to me which was important (being newly single) because I didn't think any man would be attracted to a bald woman but now I know that is not the case.
I feel it will always have an impact on us but not all bad. I have made some amazing friends in my alopecia group and we have a yearly weekend away and we have the best crack and laughs and we went to the Alopecia Conference in Bristol last year and it was an amazing experience.
I wish you well on your journey and I am hopeful that alopecia will not always have a negative impact but will also have a very positive one, in time, on your life.
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Hello
I am 59 and smooth as heck and looking good.
”kind of like like Mr. Clean with tattooed eyebrows”..lol
text me 925-918-1967
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Permalink Reply by TurboK on
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I completely understand. When I went AU, I quit riding my motorcycle and driving my convertible. I was happy to leave NC, and move back to the Upper Midwest, but I didn't like the reason that made the move necessary. I was forced to move because of the AU. I lost everything when it hit. I am a Software Engineer, and fortunately, I found an employer that understood the situation and didn't care that I had to wear a ball cap all the time.
My cousin and I went to a Packers vs.Bears game, and it was the first time at Lambeau Field for us both. That was the first time I excused myself and went to the bathroom during the National Anthem. Ever since then, I avoid any situation where I would be expected to take off my cap, because it won't happen.
I have been in therapy for several years. It doesn't help with coping with this disease. It does, however, help me in other areas.
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Hello
I am 59 and smooth as heck and looking good.
”kind of like like Mr. Clean with tattooed eyebrows”..lol
text me 925-918-1967
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I cannot NOT wear a hat or wig. My head and scalp get way too cold. It sweats under the wig, but that is better than being cold. One time I fell and my wig flew off my head!!! Was may face red!!!!
Sarah Reade, MD
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