Alopecia World
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personal privacy issues
Living with alopecia my whole life has, I think, left me with some personal privacy issues.
I do things like:
-lock the bathroom door, even if I'm just blowing my nose or brushing my teeth
-lock my bedroom door when I'm leaving the house
-lock my bedroom door when I'm in my bedroom
-I let my boyfriend see me with my wig on, with the wig off, but never *just* the wig. He knows I wear one, but I don't want him to see it
-I hate it when people drop by unannounced. Even when I had totally re-growth, "surprise" visits always made me stressed out to the point where I actually panic
-When I stay with friends/family and have to share a bedroom or stay on a couch, I end up awake all night afraid that my wig will fall off if I go to sleep
Does anyone else have issues like this??? I'm trying my best to outgrow my issues, but I've found that so much of it is ingrained in my behavior and mentality after 25 years :(
I do things like:
-lock the bathroom door, even if I'm just blowing my nose or brushing my teeth
-lock my bedroom door when I'm leaving the house
-lock my bedroom door when I'm in my bedroom
-I let my boyfriend see me with my wig on, with the wig off, but never *just* the wig. He knows I wear one, but I don't want him to see it
-I hate it when people drop by unannounced. Even when I had totally re-growth, "surprise" visits always made me stressed out to the point where I actually panic
-When I stay with friends/family and have to share a bedroom or stay on a couch, I end up awake all night afraid that my wig will fall off if I go to sleep
Does anyone else have issues like this??? I'm trying my best to outgrow my issues, but I've found that so much of it is ingrained in my behavior and mentality after 25 years :(
Replies to This Discussion
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Permalink Reply by christine on
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I have four grown up children my oldest being 25 years old i am fine with his girlfriend because she was there when my hair began to fall out that was 8 years ago. I am always at home because I dont go out unless I have to. I have a son at uni in england, which I am grateful for as he does not have my burden. When my other 2 children are bringing someone home they will ring me in adavane asking do I need anything from the shop this being my signal to get my wig on I dont know if they are imbarassed or trying to protect me. I cant cope
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Permalink Reply by BaldGirlsDoLunch.org on
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It comes down to only two questions you have to ask yourself:
1) what kind of life and level of secrecy and emotional burden do I want to have?
2) am I personally willing to do whatever it takes to have the lifestyle I want ?
thea@baldgirlsdolunch.org
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Permalink Reply by Tallgirl on
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I started out with old-fashioned granny caps, scarves and nightcaps even at 11 at pajama parties, and I wear scarves even now at 56 when staying overnight or going to the powder room at friends' and relatives' houses. Keep a scarf or cap by the front door to slip it on before answering. People usually won't go into a lidded basket or drawer or hatbox in your bedroom. Or a locked closet, if you keep wigs on a styro head on a shelf.
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I understand how you feel. I have no issues with my husband and my daugters seeing me wig and make-up less but overnight guests, suprise visits and sleeping over at someone's place are really hard for me. Well the truth is I never understand how my husband can look at my bald head and featureless face and tell me I am beautifull ??
I wish I could be free of this, totally accept myself as I am, but I am not strong enough. I went to have my eyebrows tatooed today as well as permanent eyeliner, I never want to be in panic mode again when the doorbell rings. I know it might sound petty, but I could not stand it anymore.
As the mother of two beautiful girls, I find it really hard to help my girls develop self-esteem when I have none. I hope the makeup will help me feel better, but I really know that acceptance comes from the inside. After over 20 years of living with total hairloss I am still struggling... but there is always hope :0)
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Permalink Reply by tat on
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man, i show everyone my wig. infact, i tell them straight up. "yo!!! you like my hot wig?"
granted i still have a great amount of hair- i just think the wig's fun. and it saves me time in the morning.
shit, i even show people my crazy looking spot... which is regrowing, but i mean... it just looks weird as hell.
i found the more open i was with it, the better i felt about it. the less i worry about it. the less my hair falls out.
everybody got something goin' on... no one cares. and if they do- it's usually a positive thing not so much of a negative thing.
everything is alright, deary.
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Yes, the experience described by tat above is born out by Bald Girls Do Lunch wherever we meet.
Women frequently report no regrets about saying "I have alopecia" . Their lives improve. They feel free. They are happier. They relationships with family, friends and colleagues improve as a result.
What they do report is that they regret that they didn't talk openly about alopecia sooner.
Thea
thea@baldgirlsdolunch.org
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Hi
Hiding and making this condition a secret can be a burden. I understand why people make this choice and I do my best to help them realise that there can be a better way. But everyone learns this in there own time.
With my daughter I had to fight long and hard to make sure that the teenage secrecy did not spill into my daughter dealing with her alopecia. She is open about her condition with all she trusts but does not walk down the street without her hair (her choice, as she feels a little naked doing this). I feel as long as you feel comfortable with the fact that you have alopecia you will deal with it the way that makes you comfortable. This does not always mean being publicly out there. But I would think it would mean around others who have this condition and are comfortale and those you trust and love.
If the secret is a burden (which it mostly is) then I feel it's time to do some soul searching and find alternatives that do not burden you.
Rosy
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Permalink Reply by Eileen Simpson on
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I'm really sorry you feel this way, I too feel this at times. I feel a certain amount of shame that comes and goes. I do wear scarves and hats. I have two wigs that I really don't like very much because they are itchy. I recently went to California to see my son and had a hard time knowing what to wear on my head. I can't help but wonder if this all it will ever be? Lots of tears lately I too am having a hard to coping.
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Permalink Reply by Pat on
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privacy issuses??? BUT OF COURSE! i only was my hair when the house is completley empty and then i still lock the door. i just recently stopped sleeping in wigs but i do wear a granny cap or a scarf to bed. i never liked surprised visits before alopecia so you know i dont like them now. i hate wigs but i not ready to shave just yet.
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Permalink Reply by Sharan on
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This hysteria is mainly the reason I choose to 'come out' about my condition.
The freedom I now feel is priceless.
Its been a long road to reach that platform but the views are splendid if you decide to get there.
Warm wishses
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I go throu the same situation as urs. I cant go travelling with friends coz i dont want to share bedroom with them, coz it makes me feel embarassed. Even wen i go on vacation with my family, i always lock my hotel room & always conscious if the cleaning people dont just come in without letting me know (as they hav extra key). I always cover my hotel room windows with curtains coz i dont want anyone to accidentally c me without wig from the other room. Even i hav to b conscious wen room service come in. Even while visiting relatives & friends house, if i hav to sleep there, i m always conscious that i sleep on side & dont move much so that my wig doesnt fall off. Sleeping with a wig on is really aweful feeling & very discomfortable. Also, i wear scarf at home, but sudden doorbells make me conscious & panic & run into my bedroom & lock it unless i wear a wig & come out. Its really a pain!!! I know how u feel. So many things that i want to do which i m not able to do with the fear of my wig falling off, like i want to do parasailing on the beaches, goin on speed boats, paragliding on the mountains, etc....:( :( :(
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I have a lot of those issues too. I live on my own and hate visitors as I leave my wig off as soon as I lock my front door. The other day someone knocked on the door and my heart raced for about an hour afterwards. I hate feeling like I'm living this double secret life, but it's the best way for me of coping.
I hate staying at other people's houses cos it just ends up uncomfortable when sleeping.
I'm moving to another country and need to live with people in July which I'm kinda dreading, having to tell them.
How did other people cope with telling people?
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