Alopecia World
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I need someone who knows what I'm going through/been through
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Permalink Reply by peachfuzz on
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I know what you're going through. I've had various forms of alopecia since my sophomore year of high school (2008). I've been going back and forth between having hair and being bald for the last few years and it sucks, especially because I'm a girl, but I realized that I really have no choice but to be strong. You definitely can too. If you want to message me, please feel free because I'd love to talk to you!
-Emily
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Permalink Reply by Dorothy on
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I have had AU since 1973, I have been thru it all and am now going thru even more. Tell me, what is bothering you most right now? What is your situation? How can I comfort you?
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Permalink Reply by Cindy L on
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Hi Jen!
As you can see there are a LOT of us that have gone through this process, and it IS a process, please give yourself some time to learn to deal/cope with it. It's NOT easy but it IS doable, you will come out the other side stronger than you ever could have imagined. Of course we would all rather not have to go through this but that's not our fate so we do the best we can.
I have dealt with AA (since 1975), then AU (since 1995), it was much more traumatic to lose my eyelashes/eyebrows in 1975 (I was 15) then it was to go completely bald in 1995. I shaved the final bits off when it got unsightly & haven't looked back since.
At first I insisted on looking "normal" which included paying $1000 for a real hair piece that matched my "old" hair and trying every known treatment available. When I found myself putting acid on my scalp once a week & putting my head in the freezer to cool it off I said "STOP THIS MADNESS what I am doing to myself in the name of hair"??? I was able to grow a full head of pure white hair (no pigment) but as soon as my body got used to the acid treatment it all fell out again.
I quickly discovered that it's not about what you purchase it's HOW you feel about yourself that makes all the difference. Eventually you realize that most people don't even take a second look if they see you are comfortable with yourself. I gave up hair pieces years ago and only wear hats now. Do I get funny looks & cancer comments? Yes. Do I let it bother me? No. The way I see it is if someone else has a problem with how I look that is THEIR problem not mine!
Hang in there, be kind to yourself, know that you are not alone, learn all you can about it then move on with your life and be happy!
There IS always something worse out there so count your blessings (I ended up with a breast cancer diagnosis last summer, I'd take AU ANYTIME over dealing with that again). At least now I don't have to feel guilty when people think I have cancer, I use it as an opportunity to inform them about Alopecia.
Take care my fellow Alopecian, we are all here for you!
Cindy
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Permalink Reply by gayle on
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Hey Jen - you sound down? I too suffer from Alopecia Totallis - since 1995 and I feel for what you are going through. I have read the other comments below and can't add a darn thing - I totally agree that we should all be thankful we are not terminally ill - hard to be optimistic, though, sometimes? I wonder what age group you are in? I was in my mid 50's when I lost all body hair - I consider that being extremely lucky! I feel so sorry for those who are just beginning life and have a shock like we have had! My best wishes to you - we can't do anything about it - but, yes, it sure helps to have someone to share it with. Obviously, many people have come to your aid/support. Gayle
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Permalink Reply by Mary on
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I've only had alopecia universalis since last Jan. It has been difficult, but my family - husband and teenage children have been very supportive. I started yoga & went to a therapist - who told me that I was going through an identity change. I'm happy to talk to you.
I find that when you are honest with people, it is the best. I teach high school & last year I remember telling my classes that I would start wearing a wig soon. This year, because I am doing treatments that make my scalp itchy, I am wearing head scarves. My students have been very supportive. So, my advice is to be honest - to yourself & those around you - This sucks..but it could be so much worse It is only the loss of hair, and although I had the most beautiful hair & I miss it. My family & friends & people I work with have shown me that they value the inner me. I feel loved. Let it be so for you too.
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I cant understand you 100% but i can 95 % I have had alopecia areta since I was 8 years old and am now 21. We are all here for you on this site, just talk and let your feelings out. It helps a lot to write, you should keep a journal.
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Jen,
if you live in the Seattle area.. i would enjoy meeting you if possible.. my AU is recent.. 2010.. yes... it has been a shock and it's changed my life... yet it is still a good life... there is more to life than hair... i know we look "different" now.. so i think that is the hardest part about this.. we go from being normal one day to being very "different"... sometimes different is special.. yet i know the hardships of how your life changes.. in my case.. the wigs are uncomfortable so i stay at home more often... yet this has allowed me more time to read, garden, do yoga... find myself and peruse what interests me... not worry about the social scene that my hair controlled..
i hope this helps.. if you live far away you can e-mail me...
be strong... you will be loved.. even without hair....
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Hi Jen
We all can tell you stories about our experiences but the fact is you must come to terms with your condition and figure out how to best use the tools available that will enhance your appearance. My hair fell out on the sides and top but I do have frog fur in the back, since I was 16. I even became a hair stylist in order to better address my problem. Many years ago wigs were awful (some still are), but there are many great options that are comfortable. I call my hair products 'enhancements, because I like the way it sounds and now days many people wear some type of enhancement wether it is boobs, butts, legs, etc.
Try to remember that this is just a mile stone to deal with and you will be loved by your family and friends and that is what counts so calm you heart. I promise it will get better.
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Permalink Reply by Nicole on
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Hi Jen, I was once in your shoes feeling alone and around people that just did not understand what I was going through. You have come to the right place to look for support and talk to others who shares your condition. Through this website, you will learn how to come to terms with your condition and figure out how to overcome your emotions and not let alopecia control you. I was diagnosed with alopecia in 1999 and went through various stages of alopecia from alopecia areata, alopecia totalis, and alopecia universalis. Right now I am in-between stages of totalis and universalis. I have come to terms with the fact that my alopecia has a mind of its own, but I work hard at not allowing it to control me. I am still the same person I was when I had hair, except I feel more confident and strong-minded. Alopecia had caused me to develop a wig addiction on top of being a handbag and shoe lover. Try to stay positive and when a negative thought seeps into the mind, say aloud 10 times "I am beautiful and I love myself". The more you say it the more you know, feel, and show it.
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Permalink Reply by Jade Hawkins on
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http://www.alopeciaworld.com/profiles/blogs/one-step-at-a-time?xg_s...
Hey, I felt the same as you my first 20 years. Something ive came to realize recently is that we're not alone. hopefully it doesnt take you as long. check out my blog, its pretty raw but it may help. Jade
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Permalink Reply by Nazy Curtis on
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Dear Jen,
welcome to the forum! I've had Alopecia since 1999. If there is anything, you'd like to ask, if there is anything, i can help you with, just let me know or write me a pm.
Warm regards, Nazy
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