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 Paige on March 3, 2009 at 10:51pm
One of the issues you stated that you had was this site dedicated to the people with this condition. We come to this site to get support and to give support. My question to you is why do you come to this site? The only reason that I can think of for a person living with the condition to come to this site is for the same reason. Despite your anger and frustration, I think you want the support offered here, also. Why else would you be here? I think, even though your message comes across very negative, we can all embrace you for what you are feeling, because we have all had moments where we have felt the same. There will be better days....
Permalink Reply by Mari on March 3, 2009 at 11:58pm
I am in complete agreement with Just me. When I first read your blog this morning my reaction was disgust, and then went to anger. But I took pause and thought, this person is so depressed and angry themselF And I wanted and hoped that we would all be able to reach out and maybe give you some comfort and understanding. As I now read on and all the responses, and your replies back, I have to admit I have returned to one of my first emotions- anger. And then a bit more anger, because I am angry. I myself, and I will never say I speak for anyone else, am angry because so much of the attitudes and looks of the people you lament you are portraying here! This "forum" as you say was founded as a place where we all; all who are happy, sad,felt prejuiced against; can come and find support and understanding. And here where we feel loved and safe, and yes even ACCEPTED, some of us may feel attacked now just as the way you say "normal" people attack us. Everyone of us, here or anywhere out in the "world" are just living our lives and trying to do the best we can. I honestly hope that you might take a moment and realize that how you say people treat you is quite the way you are treating others.

One last thing and then I will go. The reason I said Proud is because I am proud of myself. Proud of everyone here. Instead of letting Alopecia control us, we are living our lives and Alopecia has become a PART of our lives. I am sure there are many here not just on AW. Look for them on Myspace. Sure many people have families and activities. This is just one small part of their world. So yeah, I am proud of myself and that I have taken control, and don't let Alopecia control me!
Permalink Reply by JeffreySF on March 4, 2009 at 1:50am
I started my day with content
Only to find some discontent
I knew this blog would hurt a few
But also knew my friends are true
Be proud of yourself and who you are
Alopecia World you're my shining star

Jeffrey
Permalink Reply by Lee on March 4, 2009 at 12:42am
There is a girl on this website that has wn beauty contests. There are A LOT of hot girls and guys on here! Im not sure what you consider "normal". Who the hell is really "normal" ?? Who gives a crap about society??? Screw that!! It really sounds like you need some sort of help dealing with your problems. I am totally proud that I made it through suck misery and Im still alive...and Im proud that I am not "normal" You should be too, cause it happened, and theres nothing you can do about it, so you might as well make the best of it. What other options do you have? If you are looking for help through this, we are here to help, but if you are going to continue to insult everyone, youre not find support.
Permalink Reply by Sam Reid on March 4, 2009 at 2:06am
I haven't read all the posts before mine, but am responding to your initial post, so sorry if I miss the thread of the conversation a bit.

Its funny how our mind works I think. Often it doesn't really work in our favor. I think a guy called Proust once said something like - if the goal for existence was to be miserable, then humans succeed far too often. I think this is often true, and can be put down to the types of thoughts that we have. One of the best things I've been told about the mind is "perceptions are nothing but mere reflections". As I understand it this means that how we see the would, and feel about it, is dependent on our own minds.

I know for myself at least that this is very true. My thoughts affect how I feel, and how I feel affects how I act. It's easy to get into that rhythm of negative thinking that leads very quickly to anxiety, depression , despair. Just a few weeks ago I was feeling all of those emotions, and it was because I was thinking about what will happen in the future, and my thoughts were not exactly the cheeriest. The only way I got out of it was telling those I love how I was feeling, and then going to work on my thoughts. Each time a negative thought popped up (such as 'what do they think?', 'my girlfriend will leave me', 'I'm ugly'...etc), I consciously stopped it, realized that it was a waste of mental power to be thinking such useless thoughts, focused on whatever task I was doing, and tried to stay in the present. After a few days I began to feel better, and now I'm back to my normal self. I know feelings like this may well come again, but I'll try my best to deal with them before they get too intense. For me, my thoughts define my world and how I feel about myself.

I don't know if that is any use to you, but perhaps you can see something in it. Maybe if you try and focus on something else, avoid thinking about the past or the future and instead be in the moment, you may be able to get a different perspective on things.

Good luck with it all. Alopecia certainly isn't an easy thing to deal with, but we can come to terms with it in our own way.
Permalink Reply by rj, Co-founder on March 4, 2009 at 12:29pm
As co-founder of Alopecia World, I believe enough has been said in this thread and, therefore, I'm closing the discussion to further comments. I appreciate Realist taking the time to open up about his very negative feelings and experiences of living with alopecia as well as all the encouraging and enlightening replies posted by the rest of you. Without denigrating Realist for his views, I wholeheartedly recommend that he seeks professional counseling rather than just vent his frustration, anger and suicidal thoughts online. Indeed, anyone having this much difficulty coping with alopecia should seek expert advice on coping and treatments options. Of course, it's appropriate for the rest of us to attempt to console and encourage people like Realist, but we must also bear in mind that there's nothing wrong with a person needing to be under the care of medical experts. I wish you the best, Realist, and I hope you find joy and peace regardless of the challenges you face in this life.

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