Poem 5 "My disease has a name"

#1

My disease has a name
Finally, my disease has a name
Or at least I hope

This disease that makes me the plague of the world
The outcast of society
The thing that in every moment of the day
Makes me think
Why me
Has a name

But I don’t know how to feel about it
How do I feel about having a disease
That’s almost unknown, rare
That even doctors may look at me and wonder what part of my imagination created such a condition
I can finally explain what is wrong with me
But the explanation will be as much a mystery even after I explain
Unreal
So instead of explaining myself I don’t say a word
I stay bottled up inside
And have people continue to think “I just don’t take a bath, or brush my teeth”
What are they going to say to me when I tell them
What are they going to think
I could explain every detail of my condition
And all they’ll hear is i smell

I don’t know how to feel of having a condition that’s not curable
Yes, there is treatment
Much of which is not successful for some
Even many
And no one is really out there trying to find out how they can find a cure
As if my condition does not matter because I am not going to die
My condition is not threatening to my health
But it is a threat to my psyche, my self esteem, my self worth, and even my desire to live

I fear trying the treatment, the diet of nothingness
The tablets of what the hell herbs and whatever
Low dose antibiotics that will eventually affect my liver
Refraining from physical activity
It seems like another type of prison sentence

I fear diagnosis
I have lived so long not knowing
Not understanding
And now I have a miniscule hope that i may be fixable and this is my malfunction
But what if I’m wrong
I think i like pretending that i’m right
More than knowing

I think the only thing that gives me one clear emotion
Is knowing
I Am Not Alone
I can’t believe that all this time i have been suffering
That i have tried to understand why
That I have wished death upon myself
And felt I was not worthy to breathe
That there were others like me that felt as I felt
That soaked their pillows at night
That feared venturing out into the world
Who wished only, as i
To be normal
That makes me feel relieved

I am relieved
Yes my disease may have a name
Yes I don’t know whether to be afraid, happy, unsure
I don’t know what to think
This may be the beginning of the end of my turmoil
The continuation of it
Living in a reality
Or continuing to live in the unknown
My journey is just that a journey
But the difference between me then
And the me now
Is now I don’t walk the path alone
I walk with others like me who believe, know, or hope
That they have TMAU

#2

Awesome poem. Did you write it ?

Ty for sharing !!!

#3

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…

#4

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.

#5

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…

#6

I AM SO SORRY. A HUGE DISSERVICE IT IS TO BOTH OF YOU.

#7

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.

#8

Don’t ever be afraid to be yourself here, my friend. You will always find support with all of us…:slight_smile: