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What scares you most about alopecia?
Hello,
Dealing with alopecia has been quite up and down for me, psychologically, since it started. At first, my big fear was simply 'HAIR FALLING OUT'. Now that it's progressed further and I have sort of come to realise that it truly is an unpredictable condition, my emotions have changed. I'm at a point where I don't quite need a wig, or to shave my head, but my hair loss is at an extent where concealing it is a daily duty.
I hate how I currently look. I can't wear my hair down any more, I can only style it one way, and I haven't dared get the colour done (my roots are so beyond awful) or get it trimmed or cut. What was once my crowning glory now makes me feel rubbish!
But now, my biggest fear isn't of being bald.... it's the transition that is scaring me. I see people with AU or shaved heads on here, and I think they are truly beautiful and glowing. But what worries me daily is - when and how will I explain it to people??? My boss, my colleagues, my housemates, my friends - people I haven't seen for a while??? That first initial day of going into the office in a wig/scarf/bald head... Dealing with the questions, whispers, looks. And I really hate the idea of people feeling sorry for me! I know the best way to avoid that, is to hold my head high, be confident, and not make a big deal of it. But that is easier said than done right now!
I have tried to explain this fear to a close friend who doesn't have alopecia. She said I shouldn't worry - as it might not happen. True - I could stop shedding tomorrow, who knows? (I'll still hate my hair in its present state though!)
But the point is, that doesn't reassure me - because it COULD happen. Part of me wants to delay it for as long as possible but a big part of me just wants to get it over with!!!! Because right now it hangs over me like a dark cloud.
I thought I'd start this board so people can share their particular fears - I wonder if lots of people feel the same?? Or if anybody who has done the whole 'journey' has any tips for dealing with specific phases of hair loss?
Thanks x
Dealing with alopecia has been quite up and down for me, psychologically, since it started. At first, my big fear was simply 'HAIR FALLING OUT'. Now that it's progressed further and I have sort of come to realise that it truly is an unpredictable condition, my emotions have changed. I'm at a point where I don't quite need a wig, or to shave my head, but my hair loss is at an extent where concealing it is a daily duty.
I hate how I currently look. I can't wear my hair down any more, I can only style it one way, and I haven't dared get the colour done (my roots are so beyond awful) or get it trimmed or cut. What was once my crowning glory now makes me feel rubbish!
But now, my biggest fear isn't of being bald.... it's the transition that is scaring me. I see people with AU or shaved heads on here, and I think they are truly beautiful and glowing. But what worries me daily is - when and how will I explain it to people??? My boss, my colleagues, my housemates, my friends - people I haven't seen for a while??? That first initial day of going into the office in a wig/scarf/bald head... Dealing with the questions, whispers, looks. And I really hate the idea of people feeling sorry for me! I know the best way to avoid that, is to hold my head high, be confident, and not make a big deal of it. But that is easier said than done right now!
I have tried to explain this fear to a close friend who doesn't have alopecia. She said I shouldn't worry - as it might not happen. True - I could stop shedding tomorrow, who knows? (I'll still hate my hair in its present state though!)
But the point is, that doesn't reassure me - because it COULD happen. Part of me wants to delay it for as long as possible but a big part of me just wants to get it over with!!!! Because right now it hangs over me like a dark cloud.
I thought I'd start this board so people can share their particular fears - I wonder if lots of people feel the same?? Or if anybody who has done the whole 'journey' has any tips for dealing with specific phases of hair loss?
Thanks x
Replies to This Discussion
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Permalink Reply by AJ on
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Hey Michelle and Charlene, I can imagine that is a big worry... Hopefully it will not happen. If it did happen though, they would certainly have very wonderful role models x
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Hey Aimee. How long did it take to progress from AA to AU for you? Looking back now, was the reality of it worse or easier than your fear beforehand? I often try and reassure myself by telling myself that things will never be as bad as you expect... ?!??!
You look great in your wig, and very happy.
Hmmm yeah IBS is a nuisance!
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Permalink Reply by Lili on
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Well, like you know, I have a different kind of alopecia so the fear is "how thin will it get?" But other than that, I don't know what my worse fear is (there are MANY lol)... sometimes, it's hard to slow down my thoughts and try to figure out what I feel/think, 'cause it's constantly changing. I think I'll go through all the phases of grief a few times before I accept! Getting there, slowly but surely...
My hair loss is so bad at the sides (weird for FPB), that I have to shave my head soon, the hair tangles so easily and it's a daily struggle to style it as well... I cope most days with this by wearing a hat. But for days that I want to wear my hair "before I can't any more", styling is a struggle. It's thin but passable on top, but flat, and when the wind blows......balding sides! And brrrrrrrrrrr, so cold. Already, if I wear a hat covering all my hair people look at me a bit funny. If I don't wear a hat, people look at me funny when the wind blows, which is inevitable at some point. The few times I've worn a wig, people look at me funny. I know that I can't control my hair loss or other people's reactions to it either, getting through this part is I think the hardest...some days I get through it, some days not so good. I've just come to the conclusion- alopecia isn't something people see very often and some people will look at me funny, at some point in this journey. I too, wish I could get it over with and stop being afraid of what the future will hold.
As for preparing myself for the transition into to very noticeable hair loss, and/or wig wearing... I'm not sure that I can prepare myself and have no idea how I'll handle it until it happens... but I've made this deal and pact with myself:
I won't keep it a secret if someone asks, but I shouldn't have to talk about it unless it's addressed. Kind of like people talked about in some of the other replies to this discussion. I know that no supplemental hair is completely undetectable, and just be prepared that it may be addressed. I haven't yet decided if I'd want to wear a wig most often or just wear a shaved head... I think questions from others will be prompted at some point no matter how it goes, weird looks too. I think the best bet may be to let the future unfold as it will and not worry too much about it... easier said than done, I know!
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Permalink Reply by Susan Innes on
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The worst time for me was in the transition state, as with you, Lili, and I hope you are able to avoid the worrying, especially over the holidays when things can become very stressful. The difference regarding the hair loss was that I had been told the condition would soon be categorized as alopecia universalis (genetic background known by the doctor). With the holidays approaching, I hope everyone has some sort of defensive mechanism when all the hair conditioning/dying ads and perfume commercials start surfacing. You know, the ones with hair blowing in the wind or the guys running their fingers through a woman's hair (very risky at any time), but I used to leave the room when these would show up. Also, the magazine covers at the grocery store are enough to send Niagara Falls down one's face but who can leave the line unless there is another hour to spare? Now with the loss of my husband, I'm expecting a "holiday" relapse when the alopecia (flash backs from the period of hair loss) becomes part of the grieving. I don't want to be the "Witchy Hairless Widow" over the holidays when I have such wonderful friends who deserve better.
So, any funny stories to tell? A smile will be my umbrella this year. (I will add that one of my funniest circumstances was when I was taking flying lessons and the radio headphones became stuck in my very expensive Peggy Knight vacuum wig. The instructor couldn't figure out why I was struggling at the time...so I blurted out that unless there was something in the manual on how to handle entanglement, we were both in trouble. He looked very puzzled and was definitely at a loss for words...probably one of his few times.) Hugs, Susan
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Hey Susan, thanks so much for your comments.
I soooo know what you mean about the commercials. (or adverts as we call them on this side of the pond!) I felt so awkward at first, when a hair/shampoo commercial came on - the same as when friends were talking about their new hair styles, or how they were going to style their hair at the weekend, etc. It doesn't seem to bother me any more thankfully. (that could change in a few months though!!!)
I am so sorry to hear you lost your husband. That is so sad.
But you will not ever be the 'witchy hairless widow'. No way, that is not possible. I am glad you have wonderful friends, but I am certain you are a wonderful friend to them also.
I see you have some lovely dogs. Cute!
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That's so true Lili.... we don't really have much choice other than to let the future unfold, do we! I think that's a good pact to have made.
You know what, I never really liked the wind, but since getting alopecia, I really hate it sometimes!!!!!! It's bloomin annoying! }8-i
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Permalink Reply by Fulvio982 on
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The thing that "scare" me is when I look at me in new photos from point of view I generally don't look at. I mean that looking at my head from "new" points of view make it quiet weird cause I think like I am another person looking at "that sick guy".
I have AU since three years now.. I think I've someway accepted it in a good comic way even if I know how much it costs me to laugh about it when I suffered so much to be incapable of stop it since it was AA.
Also watching some scared reaction by close old friends scare me quiet big times... cause I clearly "feel" they don't understand and don't ask about it.. I usually explaing in a funny way about it but it clearly IS a problem... but when other problems comes you will find that this is "just" one of the many that life force us to fight with.
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Hi i can really relate to your story, i found out i has aa in feb time this year to start off with i only had 1 spot that was very small but gradually got bigger and bigger and the another one and another one i now have 5 that ino of but they are very big ones that are becoming extreamly difficult to hide. I think everyone that goes threw this is at some point scared no matter how strong they are i thought i was a very strong person untill i got this i have been threw much worse but for some reason this has really affected me, i find it easier to laugh about it, make jokes about it and my friends find that weird but its the only way i can stop myself crying or being down aabout it. When i got aa i had bright red hair and i have carried on dying it, the way i look at it is if its going to fall out its coming out no matter what i do to it so i would rather be able to look in the mirror and think yeah i may be going bald but my hair is scraggly and roots everywhere than not do it and feel worse in myself. I am very open with it i tell alot of people because i dont want them spotting it and talking behind my back its not something to be ashamed of it doesnt matter whether you have hair or not you are still you and still beautiful and if people whisper or comment then they are not people you want to be around theyre not your friends.I think the women on here that have the courage to shave their heads are amazing, me personally i dont know if i could do it i feel like that is admitting defeat and that is the same reason i wont buy a wig yet i want to fight this till the very end. that is nothing against anyone who has shaved or wears wigs that is simply the sort of person i am. i am terrified that one day i will wake up and it will all be gone but untill that day comes i will fight every step of the way. Dont worry about what other people think do what feels right for you, what makes you feel better i hope everything works out for you just be yourself it doesnt matter what anyone else thinks. x
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Permalink Reply by Linda on
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Hi I couldn't agree with you more...the whole part of going through the transition is scaring me. I hate the thought of taking a shower because I know the drain will be clogged. I have to say I'm in the same boat with you and I'm coming to 3months since I started losing my hair. I've been going in to the dermatoligist once a month to get steroid treatments and suprisingly my hair is growing back in the patches but at a very slow rate. Today I go and I'm going to request that I get a biopsy done. (just to be sure)I know what I'm saying is probably not helping the emotions you are going through,but please know I understand what you are going through...I have lost over a 1/3 of my hair already and it's getting worse. I thought about just cutting my hair to a cute short layered hair cut or something ...just to change it up. I've had long hair forever and i know it will be gone. When it comes down to it hair or no hair I'm still me...hang in there and know that you have my support
Linda
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My Hair fell out over the course of 6-7 months. I wore a hat all summer long, then a scarf (which I really do not like anymore) I kept getting my hair cut shorter and shorter, then one day I went to a wig store. The sales girl was aweful, I cried but walked out with 2 wigs. One that resembled my old hair, and another one for play. Iforgot to mention that I was away on vacation when I did this. Something about being somewhere that no one knows you seemed to help. When I came home I began to wear the one that looked like me. I got more compliments on my hairstyle...I smiled and said thank you. What made the transition easier for me was I didn't really hide it from everyone. My co-workers,family, and friends new from the beginning that my hair was falling out. i always made light of it, so they did too. Now I have 6 wigs, long short, dark and light. I have names for all of them. I pretty much wear the same one to work, but when my husband and I go out he always asks,"who's going out with me tonight?" Just like picking out clothes to wear, that's how i pick out my wigs....it depends on what I'm feeling that day. I'm not saying I rather the wigs, I do want my hair back, but....being honest and having fun with it helps alot.` To quote my husband, "I didn't marry your hair." His point was that he loves me for me, and so do my friends and family, and anyone else's opinion really does not matter. LOVE YOURSELf, have confidence and you will be just fine.
Lynn
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Hi Lynn- Ditto from me...except the part about wanting my hair back. It's taken a lot of time and effort becoming comfortable with living my life as this other person (so says the analyst). The thought of having to become another person all over again (which could involve a 3rd personality--with white hair) would be too exhausting at this age. (Sorry about the "awful" sales girl; I wonder if she moves around the country?:)) Hugs, Susan
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Permalink Reply by Paty on
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Im also a ponytail girl right now. Ive developed allergies to hair dye and have been using henna to colored it. Works great and doesn't have all the chemicals normal dye has. Im getting sick of worrying about ball spots showing and am seriously contemplating a shave. Only thing i was worried about was my kids getting teased at school then while scooping my 10 yr old up yesterday I saw a beautiful little bald headed girl standing with her class. Made me ask my son if he knew her and he said yeah mom she has the same Italian food you have (lol. My kids call Alopecia a Italian dish). It made me realize how that lil girl may feel if she seen me bald..it can be a pretty lonely world..but maybe less lonely for her if she knew i share her pain. Im determined now thanks to her courage.
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