Alopecia World
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4 years and still in denial.
I am still struggling with coming to terms with having alopecia in general (after 4years),and now I'm struggling to accept (specifically),AU. I had AT at first (maybe before spring/and in 09) and this past spring/summer all of a sudden, no eyelashes,eyebrows,no hair on my head or the rest of my body. It came as a big shock because I had been using Shumuel Gonen's hair up treatment ( herbal gels). I asked him to send me another order of it and he said no, that I wasn't using the products properly. His products were the only thing that had been working for me since spring '09. I finally thought I was making progress, and now he wont even send me another order. I feel like I did back in my freshman year of college. I was crying all the time and I never went out anywhere. I don't wear my wigs anymore, they are too itchy and uncomfortable. I wear scarves and people are starting to ask questions. One of my friends laughed when I told her I had alopecia. She said " I could never get alopecia because I take care of my hair" another 'friend' of mine laughed as well. He asked me if I shaved my hair, and why would i do such a thing.I sort of felt bad that he was laughing so I decided to go along with his assumption. It wasn't the response I hoped for, but then again I made a mistake on my part: most people do NOT care about your problems and they certainly do not care about what you are going through until it happens to them. When someone's loved one dies, we can all say " I'm sorry to hear that, or "sorry for your loss" however 'sorry' we may be, we still don't know what the person is going through because we are not the ones experiencing the pain. I feel like a lot of the people I've come across just don't understand what I'm dealing with. I mean, it could be argued that being sad/depressed about hair is 'vain' or not that serious because it is not life threatening, but how does one go through their day when they don't even feel/look like themselves? It can be quite depressing. There are days where I'm like ok, I'll wear the wig,draw in the eyebrows and look good today, and there are days where I feel like everyone is looking at me, and judging me ( I know I don't owe them an explanation either, and I don't supply one). Those are the days I wish everyone around me lost all their hair and eyebrows, just to get a taste of what I am constantly struggling with. My family members are of no help. I am sick of hearing " it will grow back, you will be alright" or " its just hair". Sometimes I wish all of them lost their hair too, and then I wonder if they'll say its "just hair".I just feel resentful toward my family members and anyone who has hair in general. I try as much as possible not to think about my hair or lack of it, and I stay away from shows/magazines having to do with hair because I envy the women who can change their hairstyles, because to me hair is a form of self expression . I even shut down my facebook page just so I wouldn't have to look at anyone with hair. I have these crying spells that won't go away. I just want my hair,eyebrows and eyelashes back. I'm tired of looking sick ,and I'm tired of all the weird stares and questions( even the guy at the coffee shop at my school asked me if I was ok,as if I am sick.Alopecia has made me so self conscious, as if I'm 15 years old again.I really haven't accepted the fact that I am bald,I am in denial, and I have been for a long time. I'm 20 years old, and I feel like I haven't really 'lived' life, I'm letting alopecia take over every aspect of my life, and it irritates me. I just miss looking like me,the reflection in the mirror isn't me. I feel like I haven't seen my reflection in years.
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Comment by Bald and Fabulous AKA Terri on November 22, 2010 at 10:23am
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Hi Alexis
Im sorry to hear that you are having a rough time with this alopecia journey. I too know exactly how you feel. There was a time and not even too long ago that I was crying non-stop and hiding from the world, literally. I wouldnt go out unless absolutely necessary. People really have no idea what this condition does to someone, not just physically but mentally. I work with one woman that says she knows how I feel because her daughter and sister both had cancer. How the heck does that explain what Im going thru. It makes me soo angry and I have snapped at her a few times. How is it that she knows how it feels, she has been an observer, it makes me even angry on the behalf of her daughter and sister. Now dont get me wrong, I have had close people to me with cancer and yes cancer is devastating. But cancer patients are concerned with getting well from a disease that can be terminal. It is awful to hear that the guy you order your hair treatment from claims "you are using it wrong" does he have any idea what alopecia is. If he is selling this treatment for and to alopecians then maybe he should educate himself. As for your friends, well I think you need to sit them down and explain to them what alopecia is and how their comments effect you. And if they still dont support you, well Im sorry but I think they are not very good friends. Things do get easier, trust me. Find something that makes you feel you again. Try some new better fitting wigs, some beautiful silk scarfs, are you into makeup??? Play up your beautiful eyes with some colour. You will find you in the mirror again.
Many HUGS to you Alexis
Stephanie.....where can you find these ways that you are tieing your scarfs. Im so curious. And where is your shop? I have a friend that lives near perth that one day im hoping to afford to visit and would love to come by your shop.
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Comment by Norm on November 23, 2010 at 12:54pm
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L O Alexis.... sorry you're still struggling with the hair thing. But I think people are reacting to your "internal state" rather than your looks. As you say, no-one cares about your problems, but they'll always react positively to someone who's outgoing and upbeat rather than someone who's feeling down.... a lot of the time, they say those "thoughtless" things cos they think they have to say something, but they don't know what!
So come on, love and accept yourself as you are. You can't do anything about alopecia, so at some point you have to accept it, even if you don't especially like it. And you don't need hair to be good-looking anyway.... well, that's what I tell myself, anyhow (so why is it I'm still single??) ;)
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Comment by Margo on November 23, 2010 at 3:30pm
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Hi Alexis! 1st I just want to say that you have the most beautiful smile! 2nd I love your name. I dont have children but I always wanted to have a little girl and name her Alexis. You did a great job at putting into words what others of us out here feel too. More times than I'd like to admit I wish that others would lose their hair too so they would know what we are experiencing. Just the other day in the locker room at my work several of the girls were talking about how their hair wouldn't do this or they wish it would do that blah blah blah! I wanted to scream at them and say "Try being bald and see how you like it" but I didn't. Instead I just said "I love it that I don't ever have to have a bad hair day again".Some people can be so ignorant too! They saw me putting lotion on my head and said "why do you do that? Does it need moisure too?" Ahhhh Helllooooo.....1st IT is still my head even w/out hair and I didn't lose my skin too! Although I didn't say that outloud.
Anyway, Since losing my hair 3yrs ago I have pretty much isolated myself and become a hermit except for going to work and day to day errands. I've let Alopecia steal away 3yrs and guess what I'm still bald but just 3yrs older. You are still so very young and have a whole life time ahead of you. Don't let Alopecia steal away your precious years! I know it is hard to cope with sometimes, being positive, upbeat and it doesn't even feel better when someone says you're not alone. I'm going to try harder to be positive myself and get back out in the world to live and love and be loved.....so you try too OKay!? Hang in there Alexis!
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Comment by Mary on November 23, 2010 at 8:42pm
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Alexis...it's been almost 3 years since I went AT, and rapidly after that, AU. I still have my struggling days, but mostly I'm happy in my skin (lol) and have just gotten on with my life. Yeah, I wish like hell I had my hair. Read my recent blog about traveling in Indonesia, if you haven't. Some of the time it sucks being a bald woman, but you know what, a lot of the time it's JUST FINE. I've actually come to enjoy feeling "different" and "exotic". It's who I am now. Please just take it a day at a time and remember that you're beautiful. I have a T-shirt I had made that says "Yes, I'm bald....get over it!" That sums up my attitude toward those small-minded people.
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Comment by denise anthony on November 26, 2010 at 10:55am
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hi alexis i know how you feel ,my hair came out when i was 7yr young now i am 40years young. alexis i use to cry all the time and the crying did nothing but make my eyes swallowing.now i am so happy that i dont have hair because i can look different all the time and still be me and feel gorgeous. so with that said i can help you feel better about your self and you will love it. alexis im in california and i would love 2 help.denise
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alexis i make wigs and im a pro putting on lace front wigs take alook at my different looks that can be you. my friends my sister that have hair have me making them wigs.alexis once you reply 2 my comment i want to offer you my phone number and who ever else thats wants to feel more gorgeos than ever i can help you too. you owe it to yourself to bring out the best in yourself. denise
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Comment by Alexis on November 29, 2010 at 11:57am
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WOW, i didnt really know most of you felt the same way, especially some of you who have had it a bit longer. Mary, I'm definately going to LA for the conference, hope to meet you too!! I will check out ur blog post. Denise, that would be wonderful, are u going to the conference in LA? Thank you for the encouraging words, they have really been a source of comfort for me!!
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Comment by Angie on March 4, 2011 at 10:37pm
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Alexis, I just joined Alopecia World on behalf of my son, Deryck. Your email really touched me and I have to say that you have every right to feel the way you do. I don't think people should say you should just sit back and accept that you have alopecia and that's the way it is get over it. As long as there are unknowns about this condition, no one can say there is no cure. That's just foolishness! Seek and you shall find. Never give up hope, but find ways to cope in the meantime. That's what we do. We were born to have hair. That's how God made us. Something we did or something in the environment caused us to break (this is barring no other obvious explanation like chemo or injury or some other known trigger). This means it is possible to repair whatever is broken and we should keep trying because the truth may reveal itself. The other thing I hate that people say is that we should be glad it's cosmetic and not life threatening. Your body is giving you a sign that something is not right by the hair falling out. It's simpleminded to say this is not a big deal. Sorry to be so long winded, but I wanted to give you some encouragement. I don't care what anyone says. My son's hair WILL grow back!
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The other unknown that you didn't mention in most cases is the cause. It would be great if we knew the specific trigger related to each of our cases, then we could avoid/treat whatever it/they happened to be. There are many factors to consider. The position I was trying to take is that the body is extremely remarkable and with the right fuel, under the right circumstances it can heal itself. It doesn't hurt to dream positive thoughts either.
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Dom...You speak alot of truth and alot of which I believe in aswell. I was AA at 8 yrs old, regrowth within a year or so and it went like that for many years. I did extensive treatments in my twenties when the hairloss was getting worse. Hello AU. Yes I was able to grow hair but the moment I slowed down the treatments...goodbye hair. Hurry up with the treatments doc, I dont want to lose it all. Until finally the day came when hairloss was faster than regrowth and I made a decision on how much more drugs was I going to allow into my system at what other risks to my body. I learned to start accepting that alopecia is going to do what its going to do, regardless of what I want. And I had to learn to start loving me without my hair and realize that hair does not define the person we are.
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