Fred Rossi - Writings related to ME/CFS

There is a specific grief that arrives in medical settings, and it deserves its own accounting.

You go in with hope. Or the memory of hope. With a set of symptoms that are real and documented and debilitating, and with the quiet, unspoken request to be heard and believed and helped.
Click to expand...

And the grief of a bad medical appointment is not just disappointment. It is the grief of being a person with a real, serious, complex illness in a system that was not designed for you and frequently cannot find the language to acknowledge your reality. It is the grief of leaving an office more alone than when you entered.

When it becomes another source of loss, the isolation deepens in a way that is difficult to describe to people who have not sat in that parking lot afterward, just aimlessly staring ahead.
Click to expand...
 
There s a lot in this article that will hit home for all. It is worth a read.

"The Meaning
Finding out who you are when you cannot do most of what defined you is grief work. Real grief work. And it does not resolve on a schedule."

"The People
There is a particular loss in watching people stop asking. Because somewhere in the process of protecting yourself from disappointment, and protecting them from the complexity of your situation, a distance got built that neither of you fully chose and neither of you knows how to close."

"The cost of existing"
The grief of this is not just the constraint. It is the vigilance. The constant, exhausting calculation. The way you have to treat your own emotions as a budget line item because allowing yourself to fully feel something could trigger a physical response that puts you in bed for a week.
You grieve the ability to just feel things without doing math first."

"The Crashes
And the grief inside a crash is total. Not just grief for the activities or the people or the work. Grief for your own mind. For the version of yourself that could think and process and engage. For the conversations you cannot have. For the time passing that you are not spending the way you would choose. For the people in your life who are watching and worried and helpless and tired in their own way.
The worst grief in a crash is not being unable to move. It is being unable to be who you are."
 
So much deeper and insightful than anything professionals produce. And I do mean anything. I haven't seen anything on this or similar topics have any depth or show even superficial understanding.
 
You must log in or register to reply here.
Back
Top Bottom