This is the reality. Bitter as it is.

I think it's time we all stop kidding ourselves. We are different, people will always see us different. Telling yourself you're beautiful will only work for as long as you're home alone. When you step outside the only sense of beauty we get feels fake, because it is.
I'm not trying to ruin anyone's moral, I'm just trying to open your eyes. We are different, they will never accept us. And the more we form a society, camps and sites like this, damn, whole page dedicated to our illness.. the more we give this ugly, life ruining disease attention, the more we seperate ourselves from "the normal". It's bad enough we're reminded each day with each glance that we don't exactly fit in the society, no, we need to start these groups and really seperate us even more.
The problem is, alopecia is not a deadly disease therefore it gets no attention from medicine. Treatments are poor, no funding, no interest. Doctors just say "learn to live with it". NO! I'm not accepting this. Nobody should!
DON'T EVER say to yourself "I'll have to learn to live with it and make peace". No, you don't have to. You don't have to accept yourself. If you feel bitter and angry it's normal. We are the less fortunate ones. We suffer.
I'm tired of wondering what my life would be like if I'd be "normal"... what choices I'd get , have and what I could be, become. And please, don't tell me I have the same options now, because I know I don't. I'm old enough, went through enough situations to know I'm treated differently.
Sometimes I wish for a place, a society that would totally accept us. No worring "what does he/she *really* think about me" but just... be. Yes, I know, you can get to that point even in this society but it's fake. It's just you not allowing yourself to be beaten down by this disease, but what other people think won't go away. Just how you accept it and even that can shatter.
I have no positive words for you, me, us. It's just how it is and it's bad. It's bad.
It hurts me how little self respect we have. How we're in constant need of acceptance which we never truly get. I'm tired of this life and I'm not hiding the fact that I contemplated suicide... I mean, I still do.
Fear is the only thing that keeps me here.

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Replies to This Discussion

Permalink Reply by Realist on March 3, 2009 at 4:44pm
I see a lot of people searching hope in 'beloved ones' and each of us has a different experience with this disease. I have only negative as I am pretty sure you all have too.
The second thing that bothers me is what one replyed 'we are proud'... Proud of what? That you live? because being a victim is nothing to be proud about. This disease tears apart your soul, similar to being a rape victim (not that I'm comparing the two, I'm just saying that mental damage is great). There's nothing to be proud about, living is in our blood. I mean if you feel pride in fact that you are alive, good for you. I'm not proud, I'm actually angry and ashamed. I know it's not my fault, but then again, who's fault is it?
I'm not offering solutions, because there are none. Accepting it means giving up. Having hope means to delay the anger that is sure to come in due time.
none of us would choose this lifestyle still we were given this whatever you want to call it. I can't call this life.
Forums, communities, they're not helping, they're just making this thing much worse. we're screaming at the world LOOK AT US WE GATHER TOGETHER BECAUSE WE ARE STRANGE and giving people a reason more to look at us differently. Besides that we're not doing anything. Maybe just lying to ourselves, how we can cover this and that, and how maybe just maybe we are equal to the 'rest of them', when deep inside you know, yes, you who are reading this, we will never be treated equally. I can't imagine a girl with alopecia winning a beauty contest or a man with alopecia being popular with pretty girls. Yeah I know, banal examples but they make a point.
Oh yeah, one of the comments:

>>You know, I don't have alopecia. I am just the mom of a 12 year old that does. I just want you to know that everyone feels like this. If it wasn't your alopecia, it would be some other insecurity.

You don't have alopecia. It's different if you have big nose or big ass, you're still *normal* whereas if you don't have hair and eyebrows, you're... just strange. A freak. To them, you see. The rest of the people.
As I've said each one of us has a unique story but I'm pretty sure all of them are pretty sad. I came long way from a 11 year old boy crying at hot summer afternoon alone in his room to a bitter, angry man. This disease changes you. In a negative way.
Also, I'm not even contemplating of seeking any help. I don't want to take some pills to change MY POINT OF VIEW while the world stays THE SAME. I want to face the world, cruel as it is. I'll fight through this life and I'll do everything with twice as much effort and twice as much proving than anyone of the normal people ever had to. And I won't enjoy a second of it and I'll curse the day I was born till I die.
Permalink Reply by meg on March 3, 2009 at 6:19pm
Hey... fight as you might you will only get conflict. Who are you surrounding yourself with... What kind of people do hang out with? Do you think that if you had hair you would be "normal", no way, you would be complaining about the hairs that grew in the wrong places or something else. You are hurting only you, who would want to care about you when you judge yourself so sharply. You have to figure out who you are... not the surface you but the real deep down you. Because if that person does not show himself you will never have joy. Think about it because when you face the world from knowing who you are its like wearing a slick rain coat in the pouring rain and the water just slides off and you stay dry underneath... from this perspective the world is less cruel. It means that you project a different image than the surface one, the guy who is miserable because he has alopecia. Think about what image you are projecting by remaining in so much pain? Besides, almost every guy I see who has even a little male bald patterning has shaved his head... oh and how normal is it to have a tattooed body suit or sleeve or pierced eyebrows, nose and/or lips... well not until recently!! So really what is acceptance and normal any how?
Permalink Reply by Lori Black on March 3, 2009 at 5:21pm
Realist, I, like everyone here, understand your feelings all of them, the anger, the shame, the degredation that comes from looking different. It does cause you to feel different about yourself and taints the view of the rest of the world. I do wonder ( I have had AA 24 yrs so have had lots of time to ??? these things) why does everyone else's opinion matter so much that we decide based on their opinion that we don't like ourselves? I like me!!! My hair situation is NOT the be-end-all of my existence! God in His Heaven knows how many nights I laid awake and cried as a child not understanding this disease or why I have it. All the Dr's, ??? and rude people in the world will not change the fact, I am BALD!! I have decided (I wear wigs everywhere I go) I don't care what other people think ( I have developed this attitude over time) I tell people I wear a wig, if it matters to them than I don't need them in my life and they are free to go and find some "haired" person to befriend. I have a wonderful life filled with family and friends that love me. This acceptance does not keep me from ??? the whole thing, but I found that I spent alot of years worrying about the AA when I could have had alot fuller life if I would have changed my attitude sooner, when I started accepting me others found it easier too!! Why this happened isn't the issue, it is that it has and I am free to be healthy emotionally and physically as long as I choose to have an accepting attitude, how can we accept others if we cannot accept ourselves? We can't! Please find a way to have some peace and just let this all go, it won't bring your hair back, it only causes you to lose life. There is always someone that has it worse than us, a little hair is nothing compared to some folks tragedies. Jesus loves you even when you don't love yourself! John 3:16 He is the reason I am alive!!! I will be praying for you, Blessings on your life in JESUS' name! Lori
Permalink Reply by Realist on March 3, 2009 at 5:25pm
How can you say you accepted yourself and you "hide" beneath a wig? It just proves I'm right; you can't really love yourself and then hide your alopecia beneath a wig, you know.
I'm happy for your 'full' life, and I'm happy for your faith. I myself have lost all faith - in doctors, science, people and god.
Permalink Reply by Lori Black on March 3, 2009 at 5:47pm
I choose to cover my head for various reasons being that it is cold without a head covering, I don't look at myself in the mirror and hate my bald appearance I just want to have hair, however that comes I don't care anymore I like the way I feel with hair. I am sorry for your loss of faith, I have nothing without mine. I have never put any faith in Doctors anyways, they can't heal people only treat symptoms. Only God can heal us. Our hearts are what gets broken in all this, our physical apperance is just the symptom. i accept the fact that I am bald, I just prefer to wear hats that are covered in hair!! LOL We have to get a sense of humor, laughter heals!! Blessings!! Lori
Permalink Reply by Realist on March 3, 2009 at 5:54pm
there's a variety of head-wear that could keep your head warm, some are much more convenient than wigs, but I bet you know that already. I'm sorry to say but it feels like an excuse. If you'd be really 100% comfortable with what you have and would love yourself for the way you are, you wouldn't have the need to wear wigs. But you're not and that's perfectly understandable, really. We're back at my thesis that nobody should nor could accept this state, which is normal.
Regarding God - I think he looked the other way, long time ago. But that's for another forum or thread.
Permalink Reply by Just Me on March 3, 2009 at 6:24pm
I wrote to you shortly after you posted your blog. At first, I really felt that you were reaching out for help. However, after reading your responses to the many individuals who have offered a hand in your seemingly depressed and angered state, it appears that you are simply looking for an argument. You state that you want to face society, but at the same time refer to yourself as a victim...................If someone truely wants to change themselves, as well as those around them, they need to stop playing the victim first. Perhaps you had a difficult life, maybe you did not have support from family and friends, and if that is the case, I am truely sorry. Nevertheless, this does not give you a license to cast judgement on others. And if I may speak for others with AA, AU, or AT, we are not "ill", we simply have a condition which causes us to lose our hair.
Permalink Reply by JeffreySF on March 3, 2009 at 6:41pm
Agreed
Permalink Reply by Realist on March 3, 2009 at 7:13pm
I'm not reaching out for help I'm just representing a different point of view which is obviously controversial for whatever reasons you might have.
Just because I'm not going along with that "Think positive, things will be better" attitude, am I the bad guy here? I'm not trying to change myself. If they found a cure, that would change me and all my problems. I'm not changing my character to adjust to my illness.
And yes, AA is an illness, read more on wikipedia http://en.wikipedia.org/wiki/Autoimmune_disease
Permalink Reply by BaldGirlsDoLunch.org on March 3, 2009 at 7:26pm
There are many inaccuracies in that wikipedia entry.
Permalink Reply by Just Me on March 3, 2009 at 7:46pm
Yes, you do have a different view on your hair loss. And yes, you are entitled to that view, just as everyone else on this site is entitled to theirs. But, with respect to your problems, anger, etc., perhaps you should step back and ask yourself, "is it my lack of hair that is causing my problems, or is it the way I have responded to my lack of hair?" It would be wonderful to think that by simply growing your hair back all of your problems would be solved, However,I don't think that would happen for any of us. Infact, the thought is totally unrealistic. As for AA being an "illness", as an RN, I have treated individuals with illnesses far more grave then AA. Granted, I am not saying that this condition does not cause some to go through considerable psychological distress, but, there are far more serious medical afflictions in this world such as cancer, severe and persistant mental illness, or heart disease, just to name a few. I hope you someday find peace with yourself...
Permalink Reply by Meme on March 3, 2009 at 8:21pm
yeah having alopecia sucks and all...but i can live with it. we just have to be thankful to have this condition and not a life threatning one. im agreeing with Danny, alopecia has made so much more down to earth, and i know that if i didnt have this condition, i would be less likely to accpet people the way they are. We do suffer...but we can still be positive. There are so many people out there with alopecia that have accepted it and go out bald not caring what others think about them. And there acutally was a girl with alopecia who won a beauty contest http://kidshealth.org/teen/diseases_conditions/skin/hair_kayla.html
So what it normal? nothing is normal and therefore no one is normal. God Bless.

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