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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 laura on
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Hey, I developed AA a couple month ago, and decided to get a wig about a month ago. I guess I find the most frustrating thing about this disease is just not knowing. Sure, I wouldn't mind if all my hair fell out, the I could be bald and proud! but why just strange patches? Why do other parts fall out when others are growing back? I actually ended up shaving all my hair off the other day, just because I was sick of it falling out slowly. It was actually really liberating, and I think now, if it grows back I can be confident to wear a short hairstyle, where before I shaved I had sortof a mohawk look going on...
I remember totally freaking out when I had to wear my wig to univeristy for the first time. Before I had short red hair and I was coming to uni with a blondeish longer wig. But you know what? No-one noticed! Not even close friends of mine! They all just thought I got my hair dyed. It was a big relief. I like how the wig makes me look, but as soon as I get home I whip it off, it's not particularly comfortable :( I tend to be pretty open to people about my AA. I guess MY worst fear is having someone find out by accident. But I'll admit I don't always have the courage. There have been situations where I've had ample opportunity to tell a person about my AA, but I haven't for fear that they'd look at me differently. Now it seems too late to say anything, and I don't want them to find out by accident, say if my wig shifts or something like that. :(
I go out just wearing scarves and buffs when I go to the gym, and sometimes when I'm just going out. When I see someone I know, it's a bit awkward. But I don't feel like I need to justify myself, so I just speak to them normally and hope they can do the same to me.
I hope it all works out. Its crazy, but I think i've really just accepted this as part of me now. I don't get upset about it anymore. Waking up everyday and glueing/taping on my wig is just like brushing my teeth. I miss my hair, but I know that worrying isn't going to make it grow back.
So I guess all we can do is just sit and wait.
Best of luck,
Laura xox
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Permalink Reply by AJ on
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Wow, thanks for that Laura - that's really inspiring to hear!! I love that you say you just talk to people normally (when wearing your scarves) without the need to justify yourself. This is what I hope for too, as I'm quite a private person and can't bear the thought of my hair loss being a big issue for other people or treating me differently. I hope I can display the same courage when/if I reach this point.
Can I ask what type of wig you have/where from/which brand??
Thanks x
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Hey, I live in Australia and went to a salon called Chiquel in Melbourne. I'm not sure what brand they use, I think maybe it's their own brand perhaps? Sorry! I bought a synthetic wig which cost about $450. It's a lace front wig but if i ever buy a new one i'll definitely go human hair, I really miss being able to have more than one style! (at least it always looks nice when it's synthetic!)
I was really worried about it falling off. But I just recently bought some wig adhesive which is amazingly strong. Like, I can seriously yank at it as hard as I can and it wont come off. (a bit messy to take off at the end of the day, but I guess I could probably leave it on for a week or so...although I don't really like the idea of that. I'm planning to keep it on for a week when I go away to the beach with friends, so I'll see how bearable that is! :S)I usually just tape it on, but when I had more hair I used to just bobby pin it on to my remaining hair.
Hope you find something that works for you. And yeah, people sometimes stare when I wear a headscarf. Depending on what mood I'm in, I either stare back :P or just smile :)
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Permalink Reply by charlene sage on
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I can totally relate to you right now. I am at the same stage. I have so many spots that I have to wear my hair up whenever I'm out or at work. My roots are turning grey (lol) but I'm afraid to dye it for fear of either doing more damage to it or making my spots show up more. I'm in the process of purchasing some caps bcs it is to that point. I have a good friend who says he is willing to shave it for me and we can be twins, but I know he is just trying to make me feel more comfortable about it. I think its alot easier for men than women. For them bald is sexy. For us we get the stares as we must have cancer or something terrible happening to us. I get the awww you poor thing. Don't feel sorry for me just treat me like you did before it started falling out. Plus the fact that I work in the healthcare field doesn't help. People think I'm sick and looking after them. Get really tired of having to explain that I have been dealing with this since I was a kid.
I was soooooo happy to find this website and to realize that I am not alone in this and some freak. Other people that can actually relate to what I'm going through and understand my fear of going swimming and my eyebrows coming off in the water.
Thanks for joining me on this journey.
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Hey Charlene - it's so annoying only being able to wear your hair tied isn't it!!!
Yeah, the people thinking you're sick thing is awkward... I think a hell of a lot of people just don't really know what alopecia is, no can't imagine a person who is otherwise healthy could lose their hair.
I'm the same about dying it - it really needed to be done months ago and looks a right mess! Feels so unatural for me to have my hair in such a bad state! But partly I don't want to aggravate it/don't want embarrassment of people in salon seeing it fall out, and also thinking should I just put the money towards a nice wig....? But I am going to the salon tomorrow to have a chat with them to see what they think.
Me too - so glad about this site!!! It makes this experience so much easier to deal with!!! x
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Hi Rose. Thanks for your reply. Good luck with finding a topper you like - hope you find one soon. It amazes me that you could swim with a wig still on - that is brilliant!!
Definitely - me too - variety in looks is what it's all about. So long as people are comfortable in their own skin. x
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Permalink Reply by Colleen on
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Hi!! I developed alopecia last December. I noticed my hair falling out Dec 1st and it was pretty much completely bald by Christmas! I literally thought I was dying of a freak disease! I had long, thin, lighter brown reddish hair and came back to my senior year of College after winter break with shoulder length, thick, darker reddish hair... some people didn’t recognize me but NO ONE thought it was a wig, i was shocked. My close girl friends knew but none of my guy friends did until a co ed soccer game we all play in.. I got laid out by some girl and ended up flat on my back with my wig lying next to me in the middle of the field, in front of everyone! Dang was that fun! I ran off the field a wreck about to get my stuff and bolt.. But i said to myself.. why am I leaving I did nothing wrong. I stuck it out for the rest of the game. said a few brief words to my team about what was going on and they were all so supportive. The boys didn’t really no what to say at first, I don’t blame them, but they were so nice. One of them texted me after the game saying how amazing i was and that i was beautiful weather or not i had hair. My biggest fear was it falling off, then it happened, and I realized being bald really does not have to be that big of a deal in my life! At the time I did not think this way but.. Fortunately my hair pretty much all fell out within 30 days! Having it fall out more gradually would have driven my freaking bananas! I clinged on to the last 5% that didn’t seem to want to fall out! I couldn’t bear getting rid of it. I finally did it and damn I wish I would have done it sooner! It was liberating! Getting used to a bald/buzzed head takes a minute but wondering when the rest would fall out was awful and gave me such anxiety! You have to do you,, but I would say this.. if you cant leave the house without thinking about your bald spots showing every 5 seconds.. cut your hair short and get a wig! Wigs are AWESOME! Takes me 5 seconds to get ready, i get so many compliments on how awesome my hair looks everyday! I have a human hair long wig (profile picture) I curl it on Fridays and it is good to go for a week! My friends all say... man I wish my hair looked like that. I tell them... 'hey its easy, shave your head and drop a couple bucks and its yours!" I wear hair to work, and to go out on the town. i do not for grocery shopping, errands, or working out. Yes people stare, I just stare back! You just got it rock it! Honestly your friends and family dont care if you have hair or not.. so who cares what some dude at the gym thinks! People don’t treat you differently, especially if you show confidence. The only different treatment i get is a few looks, and some free stuff! i got out of a speeding ticket as well! Note: if you ever get pulled over rip off your wig.. what cop is going to give a bald girl a speeding ticket =) Everything happens for a reason.. this is happening to you because the universe has some kick ass plan in store for you.. and unfortunately you have to go through this to get there! you just have not found that out yet!
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Thanks Colleen!!!!! Ah - I love that story about your soccer game! Thanks so much for sharing it! That's so sweet of that guy to text you that - but he was absolutely right - you are amazing and beautiful!
You've got a great attitude and I really appreciate what you said. It is so true - friends and family don't care what you look like. Everyone else can mind their own business.
Your wig is awesome. You look gorgeous. Thanks for spreading your joy 8-] xx
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Permalink Reply by Susan Innes on
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Hi AJ-
Briefly, a short explanation about the disease and hair loss will be the best... and people may not feel sorry for you. Unless they have experienced hair loss or have a child with hair loss, the pain of the condition will not be truly understood. Remember, this is not a fatal disease; this is an emotional disease that is most suffered by the bearer or the parent. These people will still have you as the co-worker or friend as you are not dying... though you may feel like it because the person who wore their hair in different styles, who wore it down, who dyed the roots, and who had it trimmed....is gone.
If you don't conceal the condition, people will always be whispering, questioning and staring; but, this happens to people who have a modified walk or are in a wheel chair or have Downs syndrome. We just find ourselves glancing at something that is different...hopefully it's not a judgement call.
In answer to your question, yes, I had the same feelings. In order to get over the fear, I told everyone; some were not really interested:). Actually, some were already aware of this disease and told me about a relative or friend with alopecia (or the time they experienced hair loss). For me, the children are the most problematic. It's hard to explain to the young ones and older ones can be cruel because of their own insecurities. So, I can say that this is not a disease for wimps! It's a rocky road; but, the easy paths of life don't create a stronger person, and being a stronger person makes for wiser decisions regarding love, life and the pursuit of happiness (to quote a few familiar words:). Hugs, Susan (I have all different colored wigs; I love them! People laugh at my "many faces" and some have even say they envy me.)_
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Permalink Reply by Michelle on
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I have finally gotten over the fact that I am completely hairless. I still get a little sad when I see what I used to look like in pictures. Now my biggest fear is that one of my children will get it. That scares me to death.
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Hi Michelle,
That scared me too. I have a 19 yr old daughter and while she was growing up I was basically worrying about how she would handle it if her hair started falling out. But my fears never did come to light. She has beautiful thick thick hair. She could probably loan me some. LOL But she at least she has grown up with me dealing with this and all the fun that goes with it. She has accompanied me to the doctors and watched while I have gotten needles in my head. So at least I passed on the blue eyes, and not this.......so far (crossing my fingers). I lost my hair the first time when I was 7. Dark brown and from the crown forward. When it came back, it did so blonde. Now that I think about it, if it were present time.....people pay good money for that look and I got it for free. So my advise is to just go on with loving your kids and cross that bridge when and if it ever happens. At the very worst.....if it does happen you have the experience to deal with it and embrace it with them. My older brother just developed it a yr ago,brought on by stress and meds. He accepted it,I like to think, because he has grown up with me having it. So he knew there was someone in the family who could relate to it and understand what it was like.
Take care and good luck. xo
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