JoAnna Johnson - "The Soul Stringer"
Random Rants of a Lupie Lady

Silence Ain't Golden!!...well not always

Isn't it funny how people will act as though they are so encouraged by your efforts to raise awareness about a cause, until you give them the dirty truth!  

It is so funny to me how people who don't deal with certain tough aspects of life want you to be silent about them!?!  And it has always been that way.  It is ok for me to raise awareness about Lupus and other Auto-Immune diseases as long as I am only speaking of survival and living. I should never speak of the sleepless nights, the night sweats, the rashes, the sores, the hair loss, the biopsies, bowel troubles, the tests surgeries and procedures, dating issues, family issues, the stares, the glares, the doubts, the judgement, or the number of people who still lose their lives.  Why not?

Now it is true that my main mission, or goal, is to encourage people living with chronic illnesses to live their lives to the fullest.  It is also true that I encourage others to continue to dream big, and to do the things that you love.  I do this so that we can find a happy place in a very unhappy situation. My words are probably more for those who are experiencing what I am speaking of, because THEY need to know that others understand their plight.

Bu the reality is that many of us endure unbearable pain and discomfort, and THAT is our reality as well.  THOSE things need to be talked about as well!  How are you really going to raise awareness about anything if you aren't going to share everything that is involved.  And how are you really going to be a support to someone else if you don't know what  and  (what NOT) to do.  I will never understand why people are uncomfortable with hearing about things they are NOT personally experiencing. 

 If I don't talk about the horrible things, how can I encourage someone to live their dreams if they don't feel like I am conquering similar struggles?  The problem is, that people are always so worried about your intentions.  They think that we talk about things because we want sympathy.  That could not be farther from the truth.  We talk about things because WE need to!  And when we do, we ultimately help someone else dealing with the same thing.  

So I type this today to tell my fellow sufferers, "Don't be afraid to speak up!" Silence is indeed NOT golden, because ignorance breeds intolerance!!!!!!  What people don't know...can ultimately hurt US.

For the people who inadvertently hear our stories, try to listen.  Your listening could help someone dear to you while you learn how to deal with them.  And God forbid you ever have to go through what we do yourself, but you will be a lot more informed and maybe even less in the dark about the disease process.  

For those who are ultimately turned off by the ugly truth...FREEDOM of CHOICE is a beautiful thing.  The choice door swings both ways.

Musically Yours
The Soul Stringer

2 Comments to Silence Ain't Golden!!...well not always:

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val on Thursday, January 24, 2013 5:08 PM
Well stated.
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Schilderwerken on Friday, January 10, 2014 12:18 PM
Schildersbedrijf say: nice blog thanks for sharing
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