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Our ILLNESS is invisible, but WE are not

Posted Jun 20 2010 5:24pm

I know, intimately, how these illnesses affect my life every day.  I live it every moment of every day.  I suffer from its devastating effects every time it whimsically determines that today is the day it will knock me to my knees.  I endure its relentless attacks over and over and have done so for over 20 years.

I grow frustrated some days as to how people without either of these illnesses struggle for the smallest nugget of understanding.  I understand they have no frame of reference to do so, yet,  I still find it difficult that they can’t grasp what is wrong with me.

Invisible is right.

I saw a young man today when I was walking Dekker.  He must have been in a serious accident that included fire because his face was badly scarred and he was missing his right hand.  When I walked pasted him, I looked him right in his eyes because I wanted him to know, I wasn’t bothered by or afraid of his injury.  As I passed him, however, I found myself thinking how nice it would be for people to walk past me and be able to “see” this thing called CFIDS or FMS.

Shortly afterwards I changed my mind.  I knew that he probably encountered much discrimination and difficulties as the result of his injury.  Even still, I also realized, when he walked passed me and looked at me, he had no idea at all that I was ill.  None.  I knew he couldn’t ‘see’ it.

Invisible is right.

Then I got to thinking about my first response of wishing people could ‘see’ my illness.  Would that really make a difference?  Would ‘seeing’ the illnesses attach believability or credibility to it?  Would ‘seeing’ this illness change the perspective of those in the psychiatric world who still believe it is all in my head?  I don’t know.  All I do know is that having an illness that cannot be ‘seen’ somehow reflects poorly on me, through no doing of my own.

I repeatedly find myself approached by a modicum of suspicion by those who know nothing of who I am.  Me being the bigger person, want’s to let it slide off my back, but how long must I do this?  Twenty years of living with these illnesses and I still am fighting the impression that I am exaggerating or lazy.  All because my illnesses cannot be ‘seen’?

Seeing has become synonymous with credibility.  When did that happen?  And why has  someone determined that seeing is an appropriate marker for deciding whether or not I am really ill .

Invisible is right.

Many with these illness are housebound.  Some are even bed bound.  The severity of their illness has made them even more invisible.  Does that mean they are less credible – or more?  How silly that seems to me.  17 MILLION and counting are now ill with these illnesses.  Are they all to be approached with wary suspicion just because their illness cannot be seen?   Again, who determined that?

Invisible is right.

Besides the lack of credibility that what I say is true, living with an invisible illness is akin to living in the shadows.  I’m there, but my presence into the world has become less, thus, the world goes on without me, forgetting that I am struggling with all my might to find a way to a cure so I can rejoin them.  More often than not, relationships dwindle to a sparse memory.

I have become troubled with this aspect of my illnesses.  So many that I meet, are losing their connection with the world.  They are struggling to find what their purpose is in the midst of this challenging scenario.  I’m no different.  How many times have I asked God what is it that I am supposed to do.  I know I have a purpose, but often times it is hard to ‘see’ or find.

Invisible is right.

I have decided that I no longer want to accept the world’s interpretation of my illnesses.  While it may be one that cannot be seen with the naked eye, it is as real as if I had cancer or AIDS.   Despite the fact that these illness continue to hide and allude those within the medical and scientific world makes no difference to me.

That is why I have been searching and praying for a way to help bring CFIDS, ME, and FMS out of the shadows and into the light.  The illnesses themselves may not be able to be seen by human eyes, but the stories that go with them, most surely can.

Invisible Awareness is just that.  It is the vehicle that will bring people and their stories out into the main arena of life in a way that the average bystander can no longer ignore and dispute.  One story may easily be cast to the side as lacking credibility, but 17 MILLION and counting?  I think not.  There is much power when people come together in unity for one purpose.

Invisible Awareness is that purpose.  Perhaps after ‘seeing’ MILLIONS of personal stories, the world around us might actually develop an ability to see the truth that has always been right before them.

Our illness is invisible, but we are not.

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