But that is not the problem.
The problem is that you had the audacity to be Chronically Ill. And that simply is not socially acceptable.
People want to know when you will get ‘better’.
They wonder why you ‘don’t look ill’
They want to know when you will be ready to work.
They want to know how it makes ‘sense’ you can do things one day, and not another.
They don’t want to work with you. Certainly don’t want to accommodate you. Being forced to leaves a bad taste in their mouths. Why should they have to conform when clearly you can’t ‘handle it’?
And why do you decline all those invitations? Or never get any plans done when you say?
Why don’t you conform to what a sick person should. Do everything you can to get better and you will, don’t you know that?
I wonder if they are uncomfortable because I represent weakness? Weakness they could have someday? Am I the frailty that looms ahead of them? Does it frighten them to see even the slightest sliver of the impact illness has on my life such as they imagine what it might do to their own? Or is it simply they believe it is my fault. My weakness that lead to my demise via illness. That they can save themselves the same fate. Is that why they believe all those little ‘cures’ will help us? Because they have to believe we are not doing enough to help ourselves and if they were ill they would do everything they could… and it would make a difference?
Oh society, how foolish you are.
This is an earned wisdom many of us achieve as we age. Some of us, sure, hit our goal young. But illness comes to us all.
It is unfortunate that all us chronically ill who are ill at unacceptable times. When we are young. When we are in our working years. Have to put up with the large extent of the stigma here. I suspect as I age, my ailments will not present such a problem for society. It will be acceptable. Finally. One thing to look forward to. The permission to have a chronic illness. As far as I know, no one is pushing a 90 year old to work or conform to healthy standards even though they are chronically ill.