Some diseases mane the victim.  Some diseases waste them away.  Others work to slowly erode what you cannot see.  These are the most cruel ones.

People with these often suffer in silence.  Their lives become a struggle against pain.  The pain from the disease or the pain from the scoffing that others do to them.  Unseen forces are no fun.  Like the wind, there is little you can do to combat an enemy that cannot be aimed at.

I have gone through all the stages of the grief that come with these diseases. They have a set sequence, seven steps to fall down.  Shock or disbelief, denial, bargaining, guilt, anger, depression, acceptance/hope.

It starts with the shock phase when the diagnosis is given.  Myself I prefer prognosis, I want and need to know what I am going to experience.  But usually, you don’t get anything except vague statements that are supposed to soften the blow or keep the malpractice lawyers at bay.

I have experienced the disbelief mixed with the denial because you see nothing wrong or different on the outside. People have been taught that ‘seeing is believing’.  I, too, am a victim of the Missouri Syndrome, I want you to ‘show me’.  A hidden disease is just that – hidden from view. When you are not looking at an Xray, MRI or some other exotic image, what you see is the human being that you see no change in. Some days, it is hard to believe because others say ‘you look so good’  or ‘you don’t seem sick’.   Does a blind person have to have their eye sockets empty for you be believe that they can’t see?   Is that why sunglasses at night once got a huge negative reaction?

Personally, I am too pragmatic to bargain.  I know from working in the medical field exactly how rare spontaneous cure are.  Hell, I know how rare any kind of cure is.  Most diseases are chronic, once you have them, they stay with you until you die.  You manage them, mitigate the pain they inflict, not cure them.

Which leads me to the guilt phase.  This is a two pronged barb, on one side you cannot understand why someone who looks so healthy acts so sick, then some days you are mad at yourself for not being more compassionate.

Now you’re supposed to be angry.  I think it is a bit late for that.  I tend to flash mad and then be guilty, not the other way around.  I know I have been victim to this phase right after the diagnosis.  Angry that the disease is in my loved one, angry that I will be dealing with it as it deteriorates that person and finally angry that I am not stronger, better, more humane.

Does this lead to depressions?  Probably.  But wasn’t that the thin ice we were skating on since the first trip to the doctor? Or did is start the day you mentioned the odd ache, the stray pain, the sneaky suspicion that something was not quite right? Or have I been in this kind of depression since the days of my youth, when I went to work in the clinics and wards, seeing the face of pain, hearing the sounds of suffering?

Will I ever get to the acceptance/hope phase? Yes, in my case, it come the day they die. That day when there is nothing to accept but the fact that they are gone, the day when all I can hope is that they made it to that better place we all talk about so knowingly and hope for so fervently.





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