Alopecia World
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Alopecia veteran - and proud of it!
I use the word veteran literally and mean it. I have been fighting a war against alopecia from the moment I was diagnosed at age 4, and have waged brutal battles against countless doctors, classmates, friends, family members, and significant others. I have hated myself and my looks for more years than I care to count, and I distrust anybody who dares to think that I am beautiful in spite of alopecia. I have prayed daily for 10,592 days (as of this morning) for a treatment that won't reverse itself the moment I stop taking it, a cure so I don't have to take anything else, and a vaccine to prevent anyone else from getting alopecia. I have blamed genetics, the environment, the food I eat, the hole in the ozone layer, living a wicked life, the sins of my parents and grandparents, you name it -- I've done all of that and more in 29 years. I have educated, inspired, demonized, researched, and hoped for 10,592 days and will do all of this and more for the next 10,592 days if that is what it takes to get a cure as well.
I also, with the passage of time, come to the conclusion that unless I have Bill Gates's money or the influence of every lobbyist in Washington, I am not likely to see a cure for alopecia in my lifetime. So yes, I have learned to accept how I look, because guess what? It's not likely to change anytime soon. Do I think bald is beautiful? Absolutely I do. I love the fact that in hellishly hot, humid Tennessee summers like the one we're having now, I don't have to worry about my hair making me any hotter than I already am. I love the fact that it takes me less than 20 minutes to get ready for work, makeup included, and be out the door. I love the fact that I save more money per month on NOT having to buy hair care products or meds that don't work. And I LOVE that nowadays I am seeing more and more people modeling in fashion magazines and on TV and movies that are rocking the bald look. Most of all, thanks to NAAF and their conference as well as other support sites, I take comfort in the fact that I am NOT alone.
Gathering at a place like the NAAF Conference is much, MUCH more than just going to give NAAF money on a "Bridge to Nowhere" research goose chase. For many of the attendees, especially the children, it is the only chance during the year to let down the walls we erect to protect our feelings, to shed the feelings of isolation and ostracism that we experience daily as we try to fit into a hirsute world. It is also probably the only time that a great number of the attendees will even SEE, let alone speak to, another person with alopecia. And to have that experience alone is worth paying any price.
Do I feel that the alopecian community should be more vociferous and put our money where our mouth is and demand progress? Of course I do, and I don't think that anyone living with alopecia would disagree with me on that. However, I also think that it is just as important that we do spread the message about awareness, acceptance, and support - because whether your hair grows back in a day, week, month, year, decade, century, millennium, or never, you HAVE to have confidence in yourself in order to take over the world and get it to hear what you have to say. Make no mistake: I WILL NEVER, EVER, GIVE UP THE FIGHT FOR A CURE FOR ALOPECIA. I have subjected my body to drug after drug after drug and endured the heartache of having my hair grow back only for it to fall out again. I don't remember much of my life before alopecia, but you better believe I remember every day I have lived after my diagnosis.
It has also come to my attention recently that some people, when reading my blog posts and replies to various discussions on AW and other support sites, perceive me as a know-it-all bully. I think -- and the emphasis here is that I THINK -- that this is because of two things: 1) these same people can't be bothered to do their due diligence and research anything and everything that affects them so personally, and 2) they're not used to someone shooting straight from the hip, calling things as they see it, and telling it like it is. Every time I hear this, I can't help but think of "The Emperor's New Clothes" and these people as the Emperor living in the moment when the child pointed out that he was naked. My answer to the "Emperors" in the AW community is this: I KNOW I'm naked. I know what I know because guess what? I researched everything, and every single time I hear something new about alopecia I research it as well. I have walked out of doctors' offices, called experienced doctors dumb to their faces when they don't know or can't be bothered to know what I'm talking about, and I'm proud of it. Because guess what? That doctor whose authority and God complex I challenged might have been the doctor to tell YOU something that was inaccurate, incomplete, or just flat out WRONG, which could one day cost you a LOT more than just the hair on your head. I have researched my rights in the workplace, the classroom, and the privacy of my own home so that alopecians that follow in my footsteps can enjoy the freedom to bare all or cover up at their convenience and comfort, and don't have to be the victim all the time. I fight for myself and on behalf of all alopecians; when I defend myself, I defend you too, so that REAL bullies can't make you feel less than what you are. And when I get blunt and abrasive, I do so in the hope that you see it for what it is -- a devil's advocate point of view that challenges you to think for yourselves and speak up for yourselves, rather than cower behind private emails and mouse clicks toward something more gentle. I do this because I have spent my time in the trenches kow-towing to the beliefs of society, changing myself to appease loved ones and significant others, and biting my tongue because I was afraid someone wasn't going to like me because I said what was on my mind. Every time I did that, I was allowing myself to be silenced by a REAL bully, and eventually I got tired of it. I fought back, and I will continue to fight back, and if anyone doesn't like reading what I have to say, then I feel especially sorry for that person, because then you let alopecia and your own fears win, and make you weak, and if there's anything I can't stand, it's weakness that could have been prevented.
My blog is just that -- my personal journal of my ups and downs, highs and lows, and opinions about alopecia and life and how I see it all. I don't care if you like what I have to say or not. I welcome the critiques on my writings and my viewpoints, because it invites dialogue rather than discourages it. And if I have to do this for another 10,592 days, if it inspires one person to be more than what they are - if it motivates and challenges anyone to fight as I have fought and continue to fight - then this is one battle of many I am proud to have fought and won!
The War on Alopecia has no winners - everyone alopecia touches loses out in so many ways - which is why I employ unorthodox methods in the hope of eradicating it. I hope everyone my words reach will join me in this fight, and become an alopecia veteran too!
I also, with the passage of time, come to the conclusion that unless I have Bill Gates's money or the influence of every lobbyist in Washington, I am not likely to see a cure for alopecia in my lifetime. So yes, I have learned to accept how I look, because guess what? It's not likely to change anytime soon. Do I think bald is beautiful? Absolutely I do. I love the fact that in hellishly hot, humid Tennessee summers like the one we're having now, I don't have to worry about my hair making me any hotter than I already am. I love the fact that it takes me less than 20 minutes to get ready for work, makeup included, and be out the door. I love the fact that I save more money per month on NOT having to buy hair care products or meds that don't work. And I LOVE that nowadays I am seeing more and more people modeling in fashion magazines and on TV and movies that are rocking the bald look. Most of all, thanks to NAAF and their conference as well as other support sites, I take comfort in the fact that I am NOT alone.
Gathering at a place like the NAAF Conference is much, MUCH more than just going to give NAAF money on a "Bridge to Nowhere" research goose chase. For many of the attendees, especially the children, it is the only chance during the year to let down the walls we erect to protect our feelings, to shed the feelings of isolation and ostracism that we experience daily as we try to fit into a hirsute world. It is also probably the only time that a great number of the attendees will even SEE, let alone speak to, another person with alopecia. And to have that experience alone is worth paying any price.
Do I feel that the alopecian community should be more vociferous and put our money where our mouth is and demand progress? Of course I do, and I don't think that anyone living with alopecia would disagree with me on that. However, I also think that it is just as important that we do spread the message about awareness, acceptance, and support - because whether your hair grows back in a day, week, month, year, decade, century, millennium, or never, you HAVE to have confidence in yourself in order to take over the world and get it to hear what you have to say. Make no mistake: I WILL NEVER, EVER, GIVE UP THE FIGHT FOR A CURE FOR ALOPECIA. I have subjected my body to drug after drug after drug and endured the heartache of having my hair grow back only for it to fall out again. I don't remember much of my life before alopecia, but you better believe I remember every day I have lived after my diagnosis.
It has also come to my attention recently that some people, when reading my blog posts and replies to various discussions on AW and other support sites, perceive me as a know-it-all bully. I think -- and the emphasis here is that I THINK -- that this is because of two things: 1) these same people can't be bothered to do their due diligence and research anything and everything that affects them so personally, and 2) they're not used to someone shooting straight from the hip, calling things as they see it, and telling it like it is. Every time I hear this, I can't help but think of "The Emperor's New Clothes" and these people as the Emperor living in the moment when the child pointed out that he was naked. My answer to the "Emperors" in the AW community is this: I KNOW I'm naked. I know what I know because guess what? I researched everything, and every single time I hear something new about alopecia I research it as well. I have walked out of doctors' offices, called experienced doctors dumb to their faces when they don't know or can't be bothered to know what I'm talking about, and I'm proud of it. Because guess what? That doctor whose authority and God complex I challenged might have been the doctor to tell YOU something that was inaccurate, incomplete, or just flat out WRONG, which could one day cost you a LOT more than just the hair on your head. I have researched my rights in the workplace, the classroom, and the privacy of my own home so that alopecians that follow in my footsteps can enjoy the freedom to bare all or cover up at their convenience and comfort, and don't have to be the victim all the time. I fight for myself and on behalf of all alopecians; when I defend myself, I defend you too, so that REAL bullies can't make you feel less than what you are. And when I get blunt and abrasive, I do so in the hope that you see it for what it is -- a devil's advocate point of view that challenges you to think for yourselves and speak up for yourselves, rather than cower behind private emails and mouse clicks toward something more gentle. I do this because I have spent my time in the trenches kow-towing to the beliefs of society, changing myself to appease loved ones and significant others, and biting my tongue because I was afraid someone wasn't going to like me because I said what was on my mind. Every time I did that, I was allowing myself to be silenced by a REAL bully, and eventually I got tired of it. I fought back, and I will continue to fight back, and if anyone doesn't like reading what I have to say, then I feel especially sorry for that person, because then you let alopecia and your own fears win, and make you weak, and if there's anything I can't stand, it's weakness that could have been prevented.
My blog is just that -- my personal journal of my ups and downs, highs and lows, and opinions about alopecia and life and how I see it all. I don't care if you like what I have to say or not. I welcome the critiques on my writings and my viewpoints, because it invites dialogue rather than discourages it. And if I have to do this for another 10,592 days, if it inspires one person to be more than what they are - if it motivates and challenges anyone to fight as I have fought and continue to fight - then this is one battle of many I am proud to have fought and won!
The War on Alopecia has no winners - everyone alopecia touches loses out in so many ways - which is why I employ unorthodox methods in the hope of eradicating it. I hope everyone my words reach will join me in this fight, and become an alopecia veteran too!
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Comment by Tallgirl on June 12, 2011 at 1:21pm -
I think the older one gets and the longer one has gone through all this, as you have, the more the current reality of alopecia is realized. While many of us tread softly on AW for the newbies, I am sure we secretly or openly agree with you. It gets to a point sometimes that I can no longer respond with anything to change the mind of someone Stuck in Sad...so I just refer her (usually a her) to all the things I have already said and the responses or discussions already here in the archives. There will be a never-ending restart of the same worries and questions here, so if it gets to the point when you weary of trying to help the world, take a break. Go on vacation here, and seek out those who share your views, humor, interests. Veterans need vacations, too! I just had me a great one! : )
As to NAAF Conference, even ONE can solve so many internal issues and stay with you for many years. Where else can you enter a world for a weekend where everyone else looks like you, can discuss this and can still have fun?
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Comment by Rose Marie' on June 12, 2011 at 6:42pm -
I think that's what I like about AW. You can be you here.
I've personally never found your posts to be anything other than honest. Keep doing your thing, as a mum appreciate your insight and care.
Rosy
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Comment by Cindel on June 12, 2011 at 7:28pm -
Preach on sister!!! You put it into words that I could never even begin. I feel like printing your blog post and sticking it in my wallet. LOL.
I do keep AA a secret from friends, co-workers, strangers etc. not because I'm ashamed, scared or embarressed but because I'm tired of people feeling sorry for me. I'm not terminally ill. Alopecia does not cause me physical pain only emotional. I hide it because I'm tired of answering questions 'what can I do to help', 'why', 'when', 'how'. I do want to raise awarness but not everyday! :)
I will be giong to a NAAF conference in July for the first time ever! I'm super excited and can not wait.
You are not a bully but and advocate for all of us with alopecia. Some people are 'fighters' and some are 'lovers' so to speek. I'm the lover that backs down and hides out. LOL! It takes all kinds of people to make the world go round and you should be proud of yourself for all that you have learned, researched and most importantly inspired!
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Comment by Terri on June 12, 2011 at 8:51pm -
Hell Yeah Sister !!!!! Loud and Proud Alopecia. I will continue to fight.
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Comment by JeffreySF on June 12, 2011 at 11:03pm -
Kat and all of AW,
Having alopecia is a hard battle to fight. I for one, along with many others have won the battle through acceptance. I have wonderful people like yourself to thank for that!
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Comment by Frank Pratt on June 14, 2011 at 12:38am -
While I have only dealt with areata on face arms & legs, & male pattern baldness, I was teased, bullied growing up for other reasons, but I made it. Since so many people have helped me over the years, thats why I go out of my way to help others, especially here & on Facebook. I can just about guarantee I have endured more physical pain than anyone else here on AW. I don't think anyone can come close to having 26 operations like I have had,yet there are many people that tell me I'm the strongest person they have ever known. So I agree with you Kasta, 100 percent.
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Comment by kastababy on June 14, 2011 at 2:33am -
Poor Emperor Alice,
You have made it abundantly clear that you see me as nothing more than a condescending, know-it-all bully, and to add insult to injury, you cover up your insults with the excuse of pain meds. If I am so condescending, and if you are so strong in your own convictions, why continue to justify your decisions about your chosen course of treatments to me? Who are you trying to convince more, me or yourself?
I don't have the time or the desire to get into a squabbling contest with you over what you do to your body. Once you made it clear to me how you felt, I stopped caring and moved on to other far more important matters than building your self-esteem and justification for YOUR treatment. (Hint: it's called SELF-esteem for a reason - not YoKasta-make-you-feel-better esteem!) Therefore, unless my message is indeed reaching you and prompting you to reconsider your own decisions, please refrain from commenting upon my blogs. If you want to post a response to what I say, then please do so in your own space - because my space is reserved for people who are receptive to what I have to say, regardless of the manner in which I say it. After all, I wouldn't want to make you feel like any more of a victim than you have made yourself out to be as a result of my harsh, condescending opinions.
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Comment by Dom on June 14, 2011 at 1:01pm -
There are only two seasons in England. July and Winter! I have never experienced a Tenessee summer but i have experienced a Turkish summer with and without hair, and it's a furnace. Every pore in your body opens and you can see it happening as the sweat pours out. When i had hair the sweat would run down my head and slowly drip to the floor. My eyebrows /lashes would protect from me from the sweat. Without hair, sweat cascaded down my forehead to the bridge of my nose and channelled into my eyes. What bliss! The sweat blobbed on the ground and my eyes stung from the sweat. No amount of towelling or dabbing eyes with bottled water would alleviate the stinging. Oh the joys of having hair and i do remember!!!!! Hair contains the sweat and decreases the flow and brows/lashes do their job. It is pleasant to go in the sea though but your head can get sunburnt. In Winter it is very, very, very cold when you first have AU. You think you are sticking your head out of an igloo.
Buy a balaclava for Winter and a sweat band + carry around a towel for hot summers.
There is NO cure for Alopecia or any effective treatment for AU. People who grow back their hair (for good periods) have AA and you don't have to do or buy or see anybody for this to happen. It takes about a year to grow back. You just have to wait! Many people ( and healers lol) say it was their product but that's baloney.
I first had AA in 19 79. Since then i have hair for 26 years and about 6 years of AU. in the 26 year period i had AA 4 times for about a year apiece. In 30 years there have been no new medical treatment advances. Absolutely NONE at all......anywher in the world. There has been scientific advances into the genetic side of Alopecia. I have read 0000000's of posts and 0000's of medical and research documents over the past 6 years. Yet there is no treatment on the market and i bet there won't be in my lifetime. All treatment posts or blogs dangle in cyberspace. Just like a bad internet link.
1 Steer well clear of treatments. There are none. Doing nothing is just as good.
2 If there was a treatment ........don't you think i would not have heard about it? Or many others who fathom the depths of the cyber world.
3 I would tell you and so would others and NAAF and any other organisations.
4 This is a condition you accept and adapt too. You buy whatever you need to function. You learn from your mistakes. Remember it is you who are dealing with the hair loss. Forget treatments and bogus products and look after your product. Almost all people who come to terms with it do the same things.
5 Tell people and more people. Most already know lol
6Wear what you like on your head or wear nothing
7 Have some cosmetic work.
8Leave Doctors and treaments to sick people.
9 AU is more often than not a lifetime experience.
10 Enjoy your life
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Comment by Dom on June 14, 2011 at 5:28pm
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"Many receive advice, few profit from it"
Publius Syrus 42 BC
"Life is a disappointment but Alopecians , if they be Alopecians, are not disappointed"
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Comment by Terri on June 14, 2011 at 8:08pm
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Dom....you said it perfectly. No one could do better in explaining it. Bravo.
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