Alopecia World
www.alopeciaworld.com
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.
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.
Replies are closed for this discussion.
Replies to This Discussion
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Permalink Reply by Just Me on
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Sometimes its really hard to except this, I know, I have those days when I feel like no one understands. Some days I just want to hind under the covers and stay inside. But, I pick myself up and go on, because the alternative is much worse then the condition itself. Perhaps you could try a therapist, someone who you could vent to and help you to come to terms with your feelings. You have made an attempt to reach out to others just by joining this site, and that is a good start. If anything, talk to someone, no one needs to feel alone................
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Permalink Reply by Paige on
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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. We all have insecurities. We all feel that we don't belong. I constantly have thoughts that people don't really like me, that I am awkward in social situations. Everyone has something they deal with. Something that makes them different. There is no such thing as "normal". It would be called "the stepford wives".
I know, I know. I haven't ever had to deal with this, but I'd like to think I would choose my daughter's attitude of "ok, I have this, but I am who I am, and I am going to live life to its fullest." And this attitude is from a kid who had 5 different kids in one day try to pull her wig off while she was walking down the halls. Choose your attitude...it really is your choice. Don't let this disease win....please. -
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Permalink Reply by Lee on
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I agree with Paige. Everyone does have their baggage....and this is ours. I went through the same suicidal thoughts. Have you gone to a therapist? I did, went on meds, and it helped me soo much. Everyone gets through it in their own way, but don't let alopecia win. Im sure many people love you and need you, and don't give a crap about your hair. Try a way to get your feelings out like art or music...you would be surprised how much that could help.
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Permalink Reply by kim on
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So what good is being negative!! The facts are you really can t do anything about society!! Only yourself!! I know it totally sucks but you have to figure out how you personally can deal with it!! There are a ton of different people out there that are "NOT ACCEPTED" Oh well!! that is what makes the world go round!! I have been using some bio identical hormones that seem to be working and Im just starting to figure out this mess!! Email me if you would like to chat! I feel awful that your so upset!! Really you should not worry about others!
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Permalink Reply by Mari on
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I don't believe we have "little self respect". And I also don't think that we are basically lying to ourselves. Yes, I can totally agree with how you feel. Many, many times I too have felt that way. And it IS a struggle to deal with Alopecia every day, day in day out, months, years. But if we give in to the depression and anger then we are letting it win. How does it help us to go on with our lives when we are angry, resentful, hidden away in a room???? Having this site, having our "groups", I think that proves how much self respect we have. We are standing up for ourselves, being proud. I honestly know exactly how much this site is important! How much value the people here have. I am 38. Got alopecia for the first time at 17. Never knew anyone with it. Thank God Cheryl and RJ created this site a year ago, and I think of all those lonely years I had and the hurt and anger I went thru, ALONE. Now I have the support and understanding of so many. Wonder how that can be "in constant need of acceptance". I truly hope that your eyes can open and you will see how valued you really are.
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Permalink Reply by meg on
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Yes, bald is not beautiful nor is it accepted in women in this society but you and I, and others were dealt this hand. So, you have a choice to continue to hurt yourself with your thoughts or change your attitude. Think on this: How are you reacting to the Alopecia? What happens when you leave your front door and enter society? What is your attitude and thoughts as you leave? Are you allowing everyone to judge you, even the the unknown person walking their dog? If you do then you have given over your control, "your say" as to how others will treat you. I am not saying that because we are different there will not be rejection but when rejection happens, know that it is Not You but Fear! The offenders have fear within themselves, mainly fear of the unknown, untested, which means fear of anything outside of "normal". How you handle the rejection, your attitude even before the rejection, is what is important.
You mention, suffering in your discussion... I bet you start the cycle the minute you look in the mirror. How often do you think "I hate this, I wish I were normal" as you drew on eyebrows, outlined your eyes to make them look as if there are eyelashes and put on a wig? So right at this point you have Attitude!! The attitude which sets the day, and in which you lose your personal connection to who you really are, and by this I mean not the shell (the body).
Acceptance is something that comes and goes, if you look at it like the teeth on a saw, the teeth are like when we have it and the space between the teeth is when we don't. Even "normal" people have the same up/down patterning but maybe the frequency of the pattern vary; like the difference between a really big saw for cutting tree limbs and a hack saw. The really big saw has less teeth but the space between them is wider and this could represent the "normal person". A hack saw could describe us because we invite more people to judge us because we feel different. The hack saw has more teeth and the space between the teeth is more shallow since we do not allow ourselves to keep the feeling of acceptance. The frequency is higher when we start the cycle of thinking of how much we hate... how our body betrayed us. So, how do you think we can get to a place where we feel better?
O.K.... probably enough lecturing... but think about it. I have had alopecia for, I think (because I don't think about it much anymore) for 10 years or more where I had to wear a wig. I am in my mid-fifties and have recently lost most of one eyebrow, some of the second, some eyelashes, and most of my body hair... all this and menopause too! Joy upon joys! And this is how I am thinking about it because, I no longer have to puck, wax, shave, dye, laser nor go often to get my hair done, and on top of this joy, my friends are envious that my hair is perfect each and every time I choose to wear it or not (every time I go to the gym or in the house/yard or at the beach/pool= no wig)! and by the way I refer to it as "My Hair" not a wig. I look in the mirror and laugh most of the time because I really like the way I look without hair! The eyebrows are another matter... but instead of hating them when I do makeup I think great job! Remember, most women look better with even a little make-up or there would not be such a huge industry!
Yes, I am married (27 years) but he went bald first (male bald patterning) and I didn't divorce him! If he really was turned off by my appearance then I would gladly let him go... he did not question me accepting him bald nor did I question him when I went bald. I guess what I am saying is ... there are still days when I am in the space between the saw teeth but then I ask myself "what does this have to do with? Is it really how I feel or my perception? And in the end I don't think about it at all... because who we really are is looking out through the shell and when we project that, then others no longer view the shell. One last thing and then I will get off my soap box... when we are too needy or wanton for something (love, acceptance, etc...) human nature turns to its animalistic side and sensing the neediness inflicts pain, thus we may get the opposite reaction of what we believe we need. -
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Permalink Reply by JeffreySF on
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My advice to all Alopecians is to attend a NAAF Conference. It will change your life!!!
Jeffrey -
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Permalink Reply by Nancy on
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I would really like to hear more about the conference from your viewpoint. I looked into it, and for me it will be pretty costly - about $1200-$1500 to fly, stay, and attend.
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Nancy,
I am into my alopecia journey for 1 1/2 years.
This website and attending the NAAF Conf changed my life. Dont let the cost be an issue if you can possibly help it. Just being with others like yourself will make all the diffrence. I'd love to talk with you about this on another page. Please feel free to contact me.
Jeff -
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Ouch, I'm a lttle shocked by that one.
What you get isn't in the brochure. -
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Permalink Reply by Rose Marie' on
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Hi
This is very very difficult. I don't believe one person would realisticly pick this for themselves. But you do have this condition. So you have choices to make. I'm really concerned for your well being. I think it would be helpful to seek professional help with how you are feeling. It is not ok to contemplate taking your life - you are worth so much more than that. Please get some help with how you are feeling.
Rosy. -
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Permalink Reply by Supermom on
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I agree with Rosy. We have all felt your pain and we all want our hair back to stay. But the reality is it might never happen. Still, the world is a beautiful place and life goes on.
Please talk to someone, family or a professional and tell them how you are feeling. You seem to be in anger and denial and you can work past it. God's with you. -
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