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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 Jameelah Fernanders on
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Hi Shelly,
I have AU and I am LMBO. Thank you for making me laugh.
Jameelah
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Permalink Reply by becky b on
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Thank you for your encouraging words. I have dealt with this all of my life and still have hard times with it. I teach middle school and the new 2nd semester wig looked a little different from first semester. So a girl was obviously giggling under her breath about me today. Now at home, memories of being in the eighth grade and being made fun of come crashing to my brain. But I am who I am and I don't have to treat myself bad because someone made fun of me. My hair loss was inherited by my two daughters and now my 17 year old is seeing subtle thinning of her already thin hair.
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Permalink Reply by J. Adams on
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I just feel more comfortable wearing a wig in public. I wear a scarf or hat at home. Because I wear a variety of wigs, people think it's just me and I like to change up. Those closet to me know the truth. My two teens that are still at home are used to mom not having any hair, but I still feel more comfortable in a scarf around them because their friends are constantly coming and going. They also know about my hair loss and are cool with it:-)
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Permalink Reply by Ann Wilson on
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I like how you explain it as an autoimmune disorder and not alopecia, as I think people would understand and accept it better.
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I have had AU almost 20 years now. I can't say I love it but it does have it's advantages, for example no hairdressers and trying to cover gray hair. I was wearing a wig that I really liked and now they don't carry it in a color that I feel looks good on me so that was a challenge. I did find another style but don't like it as well. They do tend to get expensive and my insurance will not cover it. I wear a wig in public. It is challenging during the summer when it's hot out so it has changed that time of year for me in some ways. At least I stay out of the sun, a good thing. I don't think about my issue as much anymore but when I do, I think of others who have much greater challenges than me, and as I'm getting older (now 66), I'm developing other physical problems such as arthritis and COPD that are taking precedent. I think the greatest thing AU has taught me is not to be so self-conscious, concerned about my outward appearance, and to concentrate more on other people and their needs. For this I'm very thankful.
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Permalink Reply by Jane on
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I love the way you write about your feelings. I am now 60 and have had AU for a long time. I have through my work with people really been able to concentrate on others and their needs which helped me to overcome much of my self consciousness about hair loss.So although I don't consciously think about it when I go into social situations I must admit that I still occasionally get a moment of anxiety in new situations - I do agree that others have far worse challenges. I was once telling a woman who has MS that I was sad about my daughter also having some patches of alopecia when I suddenly realized - That in comparison with her situation - that alopecia was such a minimal issue.
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Permalink Reply by Paulina on
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I'm not too social- I think alopecia made me really introverted as it began in adolescence. It's just a truth that some people are jerks and I'm a sensitive person, and don't need to be exposed to people who don't understand. I have a few very close friends. Alopecia made me an artist so I am thankful for that, without having this I wouldn't have had the need for an outlet as such a young age. I look at it as giving me built in down time (non wig time) which is crucial alone time (sometimes with close friends/family/lovers). It's definitely hard, don't try and play down how hard it is because that doesn't help either. We live in a culture with very specific assigned norms of beauty and femininity. I work on accepting and loving myself daily, and for me right now that includes wearing a wig. I can't handle the stares, the comments, being the odd man out. Maybe someday but not right now. I think part of loving yourself has to do with accepting your limitations, although going out of your comfort zone can also be valuable.
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Permalink Reply by Gill on
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Hi
I have had AT for 15 yrs. At the beginning I wore wigs, they were so uncomfortable. I never wore a wig at home, and gradually started not wearing a wig outside. The first time I went aboard after loosing my hair, I thought it a good time to "go bald", I felt so "free". I always felt that I was somehow, hiding behind my wig. I started not to wear my wig out at different time, but there were some situations that I wanted to hid my baldness.
When my marriage broke up and I moved house, it was then that my wig went in the drawer and has only come out about 2 times. Most of the people I have got to know over the last 5/6 yrs don't know me with hair. yes I do get different reactions. Kids are fascinated and that's fine, I am more that happy if people ask why, I hate it when people look and laugh, it brings out the worst in me, and I end up saying things like "do you have a problem" or "I will stand still if you like then you can get a better look". this doesn't happen very much, as I am happy in my skin now.
If I could have anything back it would be my eyelashes, they are the things that I miss most. I have tattooed eyebrows that's great, but my eyes still look "piggy", cant wear false eyelashes, as I also wear glasses and if I take them off I cant see!!!!
Looking back, I think that I wore my wig for other people and their embarrassment.
Yes it is difficult to cope with sometimes and particularly in the beginning, but you don't die of alopecia, for that I am grateful.
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Permalink Reply by Weston D on
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I tried a wig. Its fun to wear and I did notice subtly that I was more likely to be included but I couldn't comb it the way I wished without revealing its nature. Most of all, I felt that there was more to come clean about with the wig than without.
So I'm bald in public and, that said, weight training helped significantly in making that a comfortable choice.
If you weight train, people are less likely to think you are sick and more likely to think you chose your look. I've had AA and / or AT since I was a boy. I know all about bad reactions to being bald in public and today I do not have that problem.
Being bald does not concern me with any group except those I want to date. They always want to know why I'm bald. I play it by ear with girls but my creed going in is "I didn't know you then". I reveal the truth slowly citing that fact that I don't grow much hair so mine is a good look for me. Then I reveal over time.
It is a type of lying and and an ex girl friend described it as a turn off. Still we are people of unique circumstances and we all have been judged for our condition at least once. I think it is within our rights to not tell very personal details about ourselves to strangers until we feel comfortable in revealing it.
We live in a society that idealizes being forthright about every thing but in reality it is a choice we are free to make. When people give me shit for breaking that ideal, its the same as giving me shit for lacking the idealized appearance and it is fully within my power to stand by my choices. There are consequences I wish to improve on though
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Permalink Reply by Dorothy on
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I am nearing 41 years with AU, it came with the birth of our first child. Within 2 weeks I was wearing wigs and I NEVER even consider going out with out a wig on. The only people who have EVER seen me without the wig on is my now deceased husband and our 3 kids. At first I would show doctors my head without the wig, I no longer even do that. Doctors at the time seemed less than caring even had a doctors go running down the hall after he saw me with out my wig on yelling to the other doctors to come see this patient. I had the wig back on and was on my way out before he came back. I don't tell many people about my AU because in the last 40 yrs I have found that is the quickest way to lose a new friend and to make yourself the topic of gossip. In the beginning I would cry myself to sleep nightly, this I did for years as I went from doctor to doctor trying to find out what was wrong with me and getting no answers. While I hate wearing wigs still, I don't cry about it any longer. I wear a stocking cap or scarf to bed during the colder times of the year, it is a matter of trying to stay warm. I did not get professional help, actually other than my husband I felt I got NO support from family, friends or even doctors. I don't look at life and say, well this is better than those who have other medical problems, this is my pain and my cross to bear and just because it is my problem does not lessen it in my eyes. I care about others with medical problems, but I don't care to compare their problem and look at myself and say, well they have it worse. This is the worse that could happen to ME. I have accepted years ago that I will never have any regrowth, I don't like it but have accepted it and figure because I am very faithful, this must be part of God's plan for me for some reason that is known only to him. I am relatively happy, no I do not have many people who I consider friends as I have kept people away because of the rejections I received in the first 10 years or so. This may not be the way others handle AU, but this is the way I have handled it. I make no apologies as I feel this was the way for ME to be able to deal with this.
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Permalink Reply by Cinder B. Rand on
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Dear Marina, I would like to answer your questions one by one. It is odd but sometimes these do present other questions, well at least for myself it does. Get ready, I can really go on. I hope that this helps with what you are looking to have answered.
I have had AU since 2007. I think in the beginning I just felt it was a fluke (for me) and that it would go away and then everything would be as it was. I would not be a hair follicle challenged individual (boy was I wrong) but I do not feel challenged like I use to. The challenges have changed and I believe will continue to do so. Gotta love change.
Coping strategies I think (and of course I can only speak for myself) but I think it changes all of the time and it is all good, even the bad days. I know that once I really understood this was really happening to me and I finally accepted it, there became a part of me that was fascinated by all of this going on inside and hence outside of my body. I think for a while I was in an almost out of the body experience. I knew it was happening, I knew it was happening to me but yet was it? It was almost like a scientific experiment but I was the subject. So coping for me is always different but I do believe it always gets better and I myself have gotten stronger. It does not hurt to talk about it or to share my feelings with others with and without hair.
I will tell you that almost everyone I have known in my life when this started happening were wonderful and amazing with their support. A few people were freaked out and said cruel things about not having hair so I decided to eliminate them from my circle. So yes everyone (from some family members, friends, and professionals) has been a part of helping me develop strategies and helping me to cope, even my animals have added to helping me along the way.
Going bald in public – I have not really been completely bald as of yet in a restaurant or in a place such as this but I do go all natural at home. Surprisingly people love it. They tell me I have a pretty head and that I should do it more often when I am out. Also they ask my permission to touch my head and if I let them they are amazed how smooth it feels. I am amazed how nice it feels as well. I am still building the ovaries to do this but I must admit it does present anxiety for me to go bald in public places. Being a person that runs more hot than cold, this does seem very appealing. When I see all of the people’s pictures on the Alopecia World site I always marvel how beautiful they look. So it is my goal for 2014 to do it! I think once I do it, I’ll be fine with it and do it more often.
I would say for the people, who have seen me; the reaction has over all been very positive. Nothing negative from what I know,
I am pretty much bald at home. Sometimes when people come over I have a piece on in the beginning but as I mentioned I get very warm so I take it off. So far outside of my home I have not gone bald, but…I am working on it. Ok I am done. Thanks for letting me add my thoughts. Peace Cinder
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Permalink Reply by Bety on
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Hello Marina,
I lost my hair when I was 17 (42 now), but it came back, then about 4 years ago it started again, now I only have a small patch on the back of my head. The first time was really hard (I was a teenager in High School) so I wore wigs. This time around I started with the wigs, then I got tired of wigs and moved on to hats. The first time with wigs at work, I just showed up and told them I have Alopecia, I 'm loosing my hair so I'm wearing wigs. My friends at work and home are very supportive and I feel really comfortable to go bald in front of them, I also discovered who my true friends were. I only tried once to go bald in front of strangers and it wasn't nice, the staring, the talking behind your back trying to figure out what is wrong with you, what type of cancer you have, why aren't you wearing a hat or something, etc... So now, when I'm going to be spending time with people for the first time I get a nice hat, or wear one of my wigs that I still have. I never had professional help, just life. It is a lot to deal with, you don't think about your hair until you loose it. Hope this helps, hugs.
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