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How do you socialize with alopecia?
Hi everyone, I would like to ask a few questions if I may?
How have you developed your own personal coping strategies for dealing with alopecia?
Did you develop the strategies alone or with your partner, friends, family or with professional help?
When you first went bald in public what was your personal feelings like and from the people who saw your?
Was the reaction positive? Was it negative?
Based on your personal experiences of having alopecia do you go bald all the time, only at home, only on vacation or a combination of wigs at work and bald at home?
Sorry for all the questions but I am very curious to see how other people deal with the social and psychological aspects of Alopecia and to compare my own experiences with them :)
Thank you for any reply,
Marina
Replies to This Discussion
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Permalink Reply by sheran on
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Hi M
Its a daily ongoing battle. Taking it day by day for few years now. Never been b in public. Even at home always covered.
Still can't except it.
Too hard.
XS
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Permalink Reply by paula on
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i have had au for 30 years but i still opt for a wig to me it's just dignity and my preference . i admire those who go without a wig...but this is my choice. at home.....i have opted for nice comfortable terry cloth covers....maybe for yourself or your spouse......but wherever you feel comfortable. just be comfortable in your own skin......and realize there is no right or wrong in how you wish to proceed. accept the alopecia....that is a huge step....then you take the power as to how you will display it....or NOT! that is your power.....xxx
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Permalink Reply by Marina Solntse on
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Thanks, Paula
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Hi, first six months i hid it behind head scarfs, even to bed. couldn't stand wearing a wig as i didnt feel like myself. but fake eyelashes and spent forever drawing my eyebrows, but then i got used (and maybe a tad bitter :) ) to it and rocked the bald head in public and stared back at whoever stared at me . now i have random bald patches and dont fuss too much if they can be seen. i get curious looks, but never conments. its always depressing when i find a new patch but i just have to think that there are people a lot worse off than me :)
have to make the most of what you've got x
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Hi there
I've been bald for thirteen years. My feeling is there is no reason to go bald in public, since wigs these days are so convincing no one needs to know you are bald. I tried public baldness a few times early on. I got a few stares and dumb comments. All it does is draw attention to yourself and I don't see the point of that.
I take my wig off at home for comfort in the heat. I don't see why people have to get so upset about
having no hair. It's annoying and it's not as pretty, but you are still alive, you still have most of your health.
Rather than focusing on what you don't have, isn't it better to focus on what you do have? Of course I get annoyed
with this disease, but compared to millions of people in the world I am so lucky. You can choose
to spend your life thinking "Poor me", or you can just get on with it. Pity parties are no fun and no help.
I occasionally let my frustration out, but then I think of people who are really suffering and it puts
things in perspective.
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I have been also contemplating it. One friend of mine, young man, became disable after very bad car accident, he cannot walk now. I am much more lucky than him, I lost only my hair, he lost his legs. I know that my condition is not the worse thing in the world, but still I find it difficult sometimes to socialize with it
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Permalink Reply by chris for hair on
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Great outlook! Wish everyone could process issues we all face like you have.
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For me I've only got a receding hairline and thinning hair and we're camping right now and I've still got my topper on!
Normally I wear a topper 24/7 but lately I'm getting a bit fed up and take it off at night.
What surprises me is that I'm a fairly well balanced person (in my opinion) but this hair thing has almost completely consumed every aspect of my life. I mean popping out for milk, getting kids from school, going out in general always equates to "what do I do with my hair"
So for me it's not so much about the hair loss, but about my perception of myself and how much I need/seek general acceptance. I can't help asking myself why it means so much to me what people think.
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Exactly, I wish I could just ignore other people's opinion.. Maybe it is just lack of confidence. When I had wonderful hair I thought that my nose was too big, now I really happy with my nose , but I have no hair ))
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Permalink Reply by KarenGinny - Iowa, US on
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Linda, I too have a receding hairline FFA- and very thin bangs that I try to cover the front bald areas with. But I know people probably notice my shiny forehead peeking through and wonder why. If I am outside for any length of time, I bring a hat to wear which is fine but not always appropriate. I have also been wearing wide headbands that I wear against my head with my bangs kind of hanging over, that helps when I'm in a windy spot or when it's too hot for a hat and at least covers most of my bald spots. I just don't want people to look at me funny and I know it really doesn't matter what a stranger thinks, and my true friends should accept me as I am, but it still bothers me. I haven't bought any wigs or toppers, not sure if I really need that yet.
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Permalink Reply by DebPB on
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Hi Marina,
I guess, put simply, my coping strategies were developed unconsiously, without professional help, over time. Its just been the development of my emotional reactions over the years, going from grief through to acceptance.
I lost my hair in 2006, within 3 months of finding the first patch everything was gone and I was wearing wigs. About 8 weeks after I started wearing a Wig, my body hair "left me" too :-)
To date I've had an occasional "growth spurt" here and there. With any particularly stressfull event in life (work or personal), I'll experience a fall about 2-3 months after the event.
I guess I'm OK with it overall, I'm pretty open about it. Anyone who I consider more than an acquaintance knows about my condition, and my close friends and family have often seen me without a wig.
I wouldnt go out of the house without a wig - even to hang the washing out! But inside, at home, I'm happy to go bald so long as its not too cold. Most of the year I sleep with a beanie on... in the hottest summer months (like now here in Australia) I'll wear a scarf.
Nowadays, anyone I tell about my condition is understanding, caring and generally supportive. Most people have never heard of the condition before and are quite shocked to learn that I'm wearing a wig (not to mention false eyebrows and eyelashes!).
Back when it first happened, mostly everyone was really good about it. I did have one colleague tho, a lady no less... she took a real good look at my wig. I was wearing it for the first time to work - and while I knew the style and colour looked good on me, it was vastly different to how I had looked before (the Wig was red, short and had lots of volume, whereas previously I had long dark hair). Anyway this colleague was much taller than me and when we met in the corridor, she mentioned my new style, then stepped in close and leaned right over me to stare at the Wig... that was really hard. I felt sure that the other women (that I had already told about my condition) must've been talking behind my back, and felt that this lady must know I was wearing a wig... I was very embarrassed at the time...
Nowdays I just deal with it - there are so many people out there with far worse diseases - people who are in pain every day. Those people are much more corageous than me, happily the disease I have doesnt hurt.
Everyone has a cross to bear.
If my hair grew back tomorrow - I'd be stoked about not having to glue on eyelashes and eyebrows every day... but I would never, ever trust any head hair (if it grew back)...I'd probably keep shaving it & keep wearing wigs :-)
Hope that helps you Marina, take care,
Deb
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Thanks, Deb,
I had the similar experience at work when I came with the new blond wig, the hair was much longer than in my previous one, I was breaking out in a cold sweat every time I was asked where i had had my hair done so good. One young girl even tried to touch my hair.. Just one lady at work knows about my condition. I have a great support from my boyfriend and my family, so I can relax just at home
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