Alopecia World
www.alopeciaworld.com
Am I ready for this ???
I have had aleopecia universalis since I was 15 yrs old. I remember the day my hair truly fell out. It's been 15 yrs and it sometimes still feels like just yesterday. I cannot belive that it took me so long to find this website and others living with, dealing with and surviving life with aleopecia. I guess it's possible I just wasn't ready to.
I have been wearing wigs since I was 15. I started out with the experience of going into a store where an older woman basically sat me in front of a window on a busy downtown street and pulled my hat off to "see what we're working with here" and then tried to have me try on what I deemed to be old lady wigs. I have never been so embarassed in my life! If that place were still open, now that I'm older and strong I would like to go back and yell at that woman and tell her and anyone who would listen that what she did was wrong. Obviously that's never going to happen and maybe it shouldn't. My mother found me another place that was much more respectful, but you had to order your wig out of a catalogue. Who does that? I couldn't try anything on, I couldn't even feel what the synthetic hair felt like and see if it looked real enough for me. I had no choices at that time. I lived with synthetic hair for a number of years until a friend of mine took me to a store that sold blended wigs (half synthetic and half human hair). What a difference that made. It looked and felt so much more natural and real and I was over the moon excited about it.
After a few years I decided enough was enough and I splurged and spent a small fortune (I was a student at the time) on a 100% human hair wig. I can honestly say I will never go back. It has been a totally different experience. I've been wearing it for a few years now. As the time comes for me to get a new wig (too bad they cannot last forever) I am in a whole new world it seems.
I'm currently in NY doing my masters in social work, something I've been working toward for what feels like forever. I recently got engaged to the most wonderful man in the world and my life is falling into place just as I'd like it to. I have a great job waiting for me when I get back to Alberta as well. In NY of course it is a million degrees and I have never sweated so much in my life. After that first day of walking around dripping with sweat I found that I could not handle the heat and I decided to put on my head scarf.
It should be noted that unless I am exercising I do not ever wear a head scarf. I wear my wig all the time except when I'm at home. Even the lack of wig when exercising is somewhat new development for me. I just couldn't handle the heat and couldn't figure any other way to survive my summer in NY in the heat other than to cover my head with the scarf. As well since NY has EVERYTHING I figured I'd do some looking around and I found a place that specializes in lace front wigs. I still haven't tried it on officially, but I bought one. I have an appt to get it cut and learn to attach it properly this week, day before I return home.
Now the time is nearing for me to return home to Alberta and I find I'm feeling very anxious about it. Not about the return home, I cannot wait for that part. I'm anxious about trying out my new wig. It's slightly different in color from my current wig. It will be fresher looking I'm sure because it's brand new and although it too is 100% human hair, I envisiou ti will just be different from my other wig. There is nothing wrong with my old wig just that it's time for a new/fresh one. My fear and anxiety is related to whether or not I'm ready to share my aleopecia with the world. It's one thing to do this in NY where no one really knows me, but to go back to work and have to explain to people that I work with or patients that I work with....that I have aleopecia and what that means and and and....I'm not sure I am ready for that.
One friend asked if I truly thought that people at work in particular would ask me about my hair when I arrived with a new wig. I imagine they won't ask as long as I only wear the one and they never see the other. However, I feel like I work with a bunch of women who are obsesesed with hair, that's all they can talk about sometimes it seems. I do not want to deal with that, but I feel I cannot avoid it all my life.
What should I do? I see all these women on this website who are so much more able to share their aleopecia with the world than I feel I am. Either they go without a wig or head scarf or they change their wigs all the time or they who knows what.
In an ideal world, assuming I couldn't just say have my own hair back, I'd like to feel free and comfortable enough to have numerous different wigs and openly wear them whenever I want to.
I go back and forth in my own head all the time. I get myself worked up about the decision and then I feel silly for getting so worked up about it and tell myself to "get over it and who cares what others think". But I know that deep down I do, I care. It's more for me that I care. I do not want to feel hurt or embarassed by anyone. I realize that these feelings are my own and when I feel them it is because I am allowing others to make me feel this way, but it's just so difficult.
I really feel a bit better having gotten this out of my system...at least for now. Thank you.
I have been wearing wigs since I was 15. I started out with the experience of going into a store where an older woman basically sat me in front of a window on a busy downtown street and pulled my hat off to "see what we're working with here" and then tried to have me try on what I deemed to be old lady wigs. I have never been so embarassed in my life! If that place were still open, now that I'm older and strong I would like to go back and yell at that woman and tell her and anyone who would listen that what she did was wrong. Obviously that's never going to happen and maybe it shouldn't. My mother found me another place that was much more respectful, but you had to order your wig out of a catalogue. Who does that? I couldn't try anything on, I couldn't even feel what the synthetic hair felt like and see if it looked real enough for me. I had no choices at that time. I lived with synthetic hair for a number of years until a friend of mine took me to a store that sold blended wigs (half synthetic and half human hair). What a difference that made. It looked and felt so much more natural and real and I was over the moon excited about it.
After a few years I decided enough was enough and I splurged and spent a small fortune (I was a student at the time) on a 100% human hair wig. I can honestly say I will never go back. It has been a totally different experience. I've been wearing it for a few years now. As the time comes for me to get a new wig (too bad they cannot last forever) I am in a whole new world it seems.
I'm currently in NY doing my masters in social work, something I've been working toward for what feels like forever. I recently got engaged to the most wonderful man in the world and my life is falling into place just as I'd like it to. I have a great job waiting for me when I get back to Alberta as well. In NY of course it is a million degrees and I have never sweated so much in my life. After that first day of walking around dripping with sweat I found that I could not handle the heat and I decided to put on my head scarf.
It should be noted that unless I am exercising I do not ever wear a head scarf. I wear my wig all the time except when I'm at home. Even the lack of wig when exercising is somewhat new development for me. I just couldn't handle the heat and couldn't figure any other way to survive my summer in NY in the heat other than to cover my head with the scarf. As well since NY has EVERYTHING I figured I'd do some looking around and I found a place that specializes in lace front wigs. I still haven't tried it on officially, but I bought one. I have an appt to get it cut and learn to attach it properly this week, day before I return home.
Now the time is nearing for me to return home to Alberta and I find I'm feeling very anxious about it. Not about the return home, I cannot wait for that part. I'm anxious about trying out my new wig. It's slightly different in color from my current wig. It will be fresher looking I'm sure because it's brand new and although it too is 100% human hair, I envisiou ti will just be different from my other wig. There is nothing wrong with my old wig just that it's time for a new/fresh one. My fear and anxiety is related to whether or not I'm ready to share my aleopecia with the world. It's one thing to do this in NY where no one really knows me, but to go back to work and have to explain to people that I work with or patients that I work with....that I have aleopecia and what that means and and and....I'm not sure I am ready for that.
One friend asked if I truly thought that people at work in particular would ask me about my hair when I arrived with a new wig. I imagine they won't ask as long as I only wear the one and they never see the other. However, I feel like I work with a bunch of women who are obsesesed with hair, that's all they can talk about sometimes it seems. I do not want to deal with that, but I feel I cannot avoid it all my life.
What should I do? I see all these women on this website who are so much more able to share their aleopecia with the world than I feel I am. Either they go without a wig or head scarf or they change their wigs all the time or they who knows what.
In an ideal world, assuming I couldn't just say have my own hair back, I'd like to feel free and comfortable enough to have numerous different wigs and openly wear them whenever I want to.
I go back and forth in my own head all the time. I get myself worked up about the decision and then I feel silly for getting so worked up about it and tell myself to "get over it and who cares what others think". But I know that deep down I do, I care. It's more for me that I care. I do not want to feel hurt or embarassed by anyone. I realize that these feelings are my own and when I feel them it is because I am allowing others to make me feel this way, but it's just so difficult.
I really feel a bit better having gotten this out of my system...at least for now. Thank you.
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Comment by traci on July 20, 2008 at 10:24pm
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i'm surrounded by people who obsess over their hair a lot too, but i try not to let it affect me. sometimes people need something external to focus their energy on. just remember that it isn't about being accepted by others, it's about accepting yourself, and as long as you feel comfortable--whether you're wearing a wig, wearing a scarf, or going bald--then that's all that truly matters.
have a beautiful day, amanda, and i wish you the best of luck =)
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Comment by amanda~ on July 20, 2008 at 10:45pm
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Thank you Traci Lee. I know in my heart that you're right. This is part of why I go back and forth so much.
I appreciate your feedback. It's always good to hear that others have had similar experiences.
All the best.
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Comment by Linda on July 21, 2008 at 12:10am
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Hi Amanda, it's all about attitude...YOUR ATTITUDE, if you let other people define who you are, they will do it. I've had AA for over 40 years, I've always worn different wigs and hairdos to cover my bald spots. Some comments were negative, but for the most part, people didn't care what I was doing with my hair, they had bigger things going on in their lives. I feel your pain about agonizing over it, but remember, you are in the driver's seat. I shaved my head bald two weeks ago and I stroll around in confidence because I love ME! That's where you have to be when you decide you're going to be free to be you, you have to love YOU! Take care and stay blessed, Alopecians are soooo beautiful!
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Comment by Zoey on July 21, 2008 at 12:28am
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I totally understand where you at coming from. I work in a business office with tons of women. And all the ladies are always changing their hair styles/colors and then everyone talks about it when they come in.. About 7 years ago when I started the job, I felt very awkward.. Like, Should I join in? I mean their hair did really look pretty. But, I kinda stayed out of it.
A couple years after that, I got so sick of staying in the same wig for work.. I have tons of cute wigs, and always changed then outside of work. When ever we went out dancing etc etc etc.
So one day, I was like.. What ever.. I mean you never know how to just bring it up in conversation with strangers/co-workers, that what they think is your real hair-- Is not....
So, why not change your hair, then let them start talking to you about it.. Perfect time to tell them you have AU.
So.. thats exactly what I did.. Heck yea I was so nervous.. Totally felt like I was going to puke... But when I entered into the office, some people didnt say anything (mostly the guys) and the ladies that did notice came up and talked to me.. and I informed them that I still have the other hair at home.. Actually several of them..lol Most of them were amazed. needless to say, I blew them away. But, after that I was so much more relaxed and felt better about myself.
That was kinda the start of my journey in accepting myself for who I am.
It takes a lot of courage to do it, but let me tell you.. Once its done.. you will feel soo much better...
Muah Zoey
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Thank you to everyone for all of your support. I knew coming on this website and feeling free to talk about how aleopecia has impacted my daily routine with people who actually know would be a good experience. Thank you.
I think that after my appt this week in NY to get my lace front wig instructions and cut I will have to revisit the idea of changing things up from time to time instead of allowing this crazy misunderstood disease to rule even just a part of my life.
I am proud of myself for having spent the entire summer in NY wearing a head scarf and feeling confident about it. That was a huge step for me. I'm on a roll...
Thanks
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Comment by Carol on July 21, 2008 at 8:19am
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I know how you feel about telling people at work because I'm going through the same thing now. If you've already worked there beyond your 3 months then I wouldn't worry about at least telling them about it. You can still wear your wig and even change it up without any worries. Just be careful though, I've been shunned and forced out of a job for having alopecia before. You learn how to read people very well when you have alopecia, so use your own judgement and if you think they'll be able to swallow the fact that you wear a wig then let em know, you'll feel better at least. :)
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Comment by Lori D. on July 21, 2008 at 9:10am
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I related to what you said. I'm pretty much a newby to this site too... I've had alopecia for 37 years. I didn't start discussing it until 2 yrs. ago when I joined another online support group. And I was even in therapy for 8 yrs. and barely ever even brought it up! I think it is about our personal readiness; in the past few years I met and married my soul mate and am at a good place in my life. Sometimes our steps are baby ones..but they're still steps right? I wear a wig outside of the home; not different ones on different days, always the same one. I'm working on going out in my yard in just a scarf...It's good to read how others have done it...Good for you on wearing your scarf out!
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Comment by Mandy on July 21, 2008 at 9:58am
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I think that a lot of the time we think people will care more about our alopecia than they actually would. What's the worst that would happen if you wear different wigs and have someone ask what's up? If someone really was stupid enough to let YOUR hair (or lack of hair) affect your relationship than you shouldn't care about them anyways. I think that it's most important to feel comfortable and confident. If you want to wear different wigs or scarves then I say go for it. Who cares what they say? I decided to wear bandanas to work instead of my wig. Seriously, people asked questions for like a day (because they cared about me and wanted to make sure I wasn't sick). After that everything went on as normal. No one treats me any differently or stares or anything. Because I explained to them and let them all know that I was fine with it. I think that if people know YOU'RE fine, then they'll be fine. Ya know?
Hugs,
Mandy
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Comment by Cheryl, Co-founder on July 21, 2008 at 3:50pm
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Amanda, thanks for sharing your story with us. It is amazing to see how many people feel the same way. I find there is such a freedom and also a lot of fun, once everybody knows. Women process their hair all the time, They cut it, perm it, dye it, highlight it, add extensions and in the black community many of them wear wigs. So in some ways, why should our processing/wigs be any different. As you can see I don't wear wigs anymore and our office has just made a complete staff change. So I was in the position of explaining alopecia to everybody again. I did it from a positive point of view and they took it from a positive point of view. Alberta probably won't be much different from NYC, the only thing is that it is going to take a day or so of anxiety to get through it. In my opinion, you now have the opportunity to have any kind, color or legnth of hair you like... take advantage of it. You will probably be envied by 1/2 the staff ;)
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Yes, I am glad everyone feels free to discuss everything here on this site. It is wonderful!
About three years ago, I started wearing my scaves out and about.. It started with going out on the boat.. Well.. I could not wear my hair on the boat.. So, I got out the only scarf I had.. It was one I used to wear in my hair as a hair tie...
Well.. it was so small and didnt fit my head right. But, thats all it took.. I felt how nice it was to be outside and not have to worry about my hair...
That was the best day in my life!!
It got me to buy more scarves and wear them all the time..... :)
Now, I am on another journey... I am now making my own head scarves! Yeppers!!
I could never find the right colors and designs to go with my outfits. So, I thought I am crafty.. Why cant I just make my own....
So, I have now made about 30 and am selling them in my store!!
I am loving it!! AU has brought so many positive things into my life and I believe I have many more to come...
I am so blessed that this site does exsist.. :)
Zoey
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