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My disease has a name
This disease that makes me the plague of the world
But I don’t know how to feel about it
I don’t know how to feel of having a condition that’s not curable
I fear trying the treatment, the diet of nothingness
I fear diagnosis
I think the only thing that gives me one clear emotion
I am relieved
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7 replies
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Don't ever be afraid to be yourself here, my friend. You will always find support with all of us.........:)
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Thank you, everyone i appreciate all of your responses. Every time i get frustrated with this life i feel like i have to come to terms with myself. I think that's always moving a step forward. I have no one around me to talk to. My family and friends would rather pretend i dont smell but proceed to cover their noses, or cover their noses and never say a word. Honestly, i wonder of who is more afraid to say the truth of my reality me or them. I like that i can be myself here. I've made new friends and have found many that can relate to me. It's hard living in a world always bottled up inside. Never being able to relay your "real problems to people." My family doesn't want to talk to me about my problem because they have tried to help me and have failed. But just because you can not help me resolve my problem, doesn't mean you cannot help me cope with my problem. To the person with AIDS their reality is that their health will deteriorate and they will not have as full a lives as they would hope, that is their fate. But dealing with their fate, the drugs, their deteriorating health, that is their reality. And encouragement goes along way.
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I AM SO SORRY. A HUGE DISSERVICE IT IS TO BOTH OF YOU.
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I wanted to say something after reading this, but I don't even know what to say.....WOW..that was amazing! You are an amazing person Now...
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Oh my heart goes out to you... the words you wrote could have been written by me! Almost everything except the smell part. I have a rare disease also with no cure and no one doing any research to find a cure. The reason for that is not enough people have it so they will not make any money if they come up with a drug. It costs money to do research and the payoff isn't good enough with rare diseases. It really is awful and I know how you feel. My disease manifests itself with painful lipomas (fatty tumor type things). My future consists of pain every day for the rest of my life! It makes me mad that rare diseases are passed by because there is no profit to be made.
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You are such a fantastic person and I am glad that you have found out, at least, that you are not alone. I care about you, you know that., as many others do..........
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Awesome poem. Did you write it ? Ty for sharing !!!
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