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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 olkabul on
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Hi,
So do I - have a huge support from my family and friends. But what the really difficult for me - the curiosity of strangers. My "private space barrier" is very thin :) so everyone, just everyone come to ask "what happens", "why do you do it" and "you know, it nice" (that's annoying too). I mean not friend or coworkers - just people on bus station or market.
In addition, I work with many clients (as reflexology and massage therapist) and even there every client have to ask...
So I prefer wigs or wraps.
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Permalink Reply by paula on
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hang in there girl,,,,,,life gives us lemons......just make lemonade......think of those who are dealing with so much worse.....it will keep our frustrations i check......xx everyday find some positive in this experience....and yes there are some....you just have to dig deep to find the humor or positive......then find a way to help someone else...a support group.....give it back.....don't remain isolated.......it will get better....i promise......stay involved with our groups........they helpxxxxxx paula
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Permalink Reply by Bonnie on
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I feel the same way about not trusting any head of hair. I used to get excited about regrowth, but now I just find it annoying, because it brings little painful red bumps, and inevitably falls out again. Someone told me she could get my hair back with essential oils. I said, "Maybe one day I'll ask you to do that, but right now, I'm enjoying being a bald lady. Did you know less than2% of the world's population get that opportunity?" :D
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Permalink Reply by Vicki on
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Hi Marina,
My hair started falling out six months ago until I didn't have hardly any left and shaved the rest off about two weeks ago. While it was falling out I wore bandanas and hats because it looked really bad towards the end. Once I shaved it off, I considered wearing hats, but realized they weren't really for me and I wanted to FEEL comfortable if it meant dealing with the stares and questions at work etc. I sent an email to my friends and colleagues. I work in a large office and deal with a lot of people. I thought it would be easier to explain in an email that I had alopecia, I wasn't sick and just wanted everyone to know. The response was very positive and supportive. I haven't gone bald at the grocery store or mall, but come spring I plan to. I'm trying to do a little at a time. Of course it's hard, but everyday I tell myself, it's only hair i'm still me, accept me for who I am.
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Permalink Reply by Marina Solntse on
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Hi Vicki, thank you for sharing your experience, it was really brave to send out emails to your colleagues.. I still cannot tell anyone that I have alopecia especially at work, sometimes it sucks.. I am really tired of wearing wigs
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Hi,
I have alopecia now for nearly a year. I attend a hair specialist who reassures me its growing back. I can't see any evidence of it and wonder sometimes if iam wasting my money. I just got so sick of standing every day in front of the mirror trying to conceal the bald patches I now wear a wig most of the time. I hate it and everything to do with alopecia, hair is so important for a lady its soul destroying.
Mary Burns
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Permalink Reply by Graham on
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Hi Marina, I guess I don't even think about it anymore as the only people who comment on my lack of hair are usually people who I've just met or who I haven't seen for a while. I know it's different for a man as there are so many baldies anyway. I guess if you are confident then you can just ignore the staring and little comments.
The first time I went out it was quite strange as I lost all my hair very quickly, I went from hairy guy to universalis in 4 months, I'm saving loads on razors but I'd still rather be the old hairy bloke.
Graham
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Permalink Reply by Lynda Hykin on
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Welcome! and NEVER be sorry, that's what this site is all about, helping each other!
At my part-time job in sales, I wear a wig. Socially, I am just beginning to go 'au naturelle' (like this phrase better than 'bald'). I wear hats at business networking functions but there is no doubt that there is nothing under there. Surprisingly most people just look, then carry on with their own issues. My 5 yr old grandson will every once in awhile ask me if I can 'put my hair back on' and I comply. At home,nothing or just a cap sometimes (because it's Canada, and it's cold!)
Right now my head needs to 'tan up' to be the same color as my face because I haven't exposed it to the sun yet so it looks to others like I've just lost my hair .
It's all a personal choice in the end.
Lynda
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Mariana,
I'm so glad you found this sight. I've had alopecia for 10 years. It started with patches that would come and go, but progressed to total hair loss, body and head about 5 years ago. Everyone's experience is different and the emotions and coping are different, but even now, as I read the kind comments to your questions, I find kindred spirits on this page. I'm openly bald. I teach at a large high school, and it was indeed a step by step process to be able to stand in the halls between classes with nothing on. I wore wigs, but never felt they were for me. Although they are perfect for others. scarves and hats are more my style, but I've worked to get to the point that whatever goes on my head goes there because I want it there, not because I feel embarrassed. That was my goal, and though the process was painful and took time, I'm a much more confident person. As for support, I never could have done this without my family and friends. If you feel like the people in your life don't understand, that is natural, too. They may not, but they do care and want to support you. Until you reach the point where you can trust them with your trials, know you have friends here do understand. We have been down this path and all of us have taken different steps and routes to navigate around the embarrassment, sadness, feelings of freakishness, and anger. You will find someone who's approach you can connect with. Good luck!
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Permalink Reply by Debbi Fuller on
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Hi Marina, it was a process. At first I was horribly embarrassed about having alopecia, but over the years I discovered that my attitude was what rules. If I am happy and confident, then others just follow my lead. I've never had a bad experience because of AU, in fact, just the opposite. I wear a vacuum wig when I go out but will pop it off anywhere, anytime to show people how it works and to show off my head tattoos! At home I usually just go bald or wear a cap if it's cold. I like my vacuum because I am now 65 and it has better hair on it than I could grow if I could still grow hair at my age!! I'm vain, so I like to look as 'pretty' as I can and hair helps! That being said, I also love the freedom of going bald when I want to. For me, it's the best of both worlds.
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Permalink Reply by Shelly on
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Mariana,
It wasn't easy to strut out into the world "topless" (as I call it...the humor puts people at ease quicker), but it is SO liberating & self empowering. The only place I don't go topless is at work. I teach in a high school & want to slowly get to that point. I do however, wear bandanas, doo-rags or scarves so that I will be comfortable at In my classroom. I wear a wig for warmth...I call it a sweater. But if I'm out & I get too warm, I take off the wig....it could be at a bar, the mall, church, etc. My bottom line is I want to be comfortable, because after all, isn't it all about me? LOL.
The man I'm currently dating was told about my alopecia the second time I met him....I wanted it out in the open. I wore a different wig than the one I met him in (again, it was winter & I wanted to be warm, otherwise I would have been topless) & asked him if he noticed anything different about me. He replied that I got my hair done & I told him I hadn't. He then said, was one of them a wig......no, they both are was my response. If HE had an issue, it was early enough where I hadn't invested more than the initial meeting & lunch the next day. I would do it again the same way.
My family doesn't care if I'm topless or with a wig. We like to bring humor to the alopecia, so I take pictures of them in my wigs....that's a hoot!
When I first needed a wig (wasn't sure how to handle the alopecia), my daughter (middle school age at the time), took it very hard. She was worried that I would embarrass her because of the wig. I used the concept of me or someone else needing glasses or braces for an analogy...they aren't made fun of, why should I? Eventually she accepted it and tells her friends now as if being bald is no big deal & I'm glad we're both on the same page.
Lastly, I love when other alopecians acknowledge me, it's a cool & empowering gift we get/give each other. For those who ask about my baldness, I explain alopecia. And for those who stare, I know it's because I'm a hottie!!! LOL.
I've thrown in humor in my response to you because it has helped me through this area of my life. I did struggle tremendously, but I love where I'm at now!!
I hope you will love yourself with or without alopecia..... I'm certain so many people love you either way!!
God Bless!
,Shelly
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