Hope: a feeling of wanting and expecting a particular thing to happen; something that you wish for. (Oxford dictionary)
As a chronically ill person, how often do you hear “Do not lose hope”? News about supposed recoveries or scientific breakthroughs are expected to “give hope,” and how many conversations with healthy people start or end with “I hope…”
The reality of living with hope in the context of chronic illness is much more complex.
What should we hope for? People who say “Keep up hope”, often thoughtlessly, mean “Hope for recovery.” The reality is, remission from myalgic encephalomyelitis without targeted treatments (which don’t exist) is very rare.
And still people with myalgic encephalomyelitis hope. I hope that I will remain stable for a while longer. I hope that I won’t lose the little that I have left. I hope that I’ll find solutions (including the final one) in case I do deteriorate further. Some people hope for little improvements, some for positive news from social insurance providers.
But hope for recovery would be irrational. It can only lead to disappointment, and in the worst case, it can lead to deterioration. On that last point, let me quote my favorite quote I ever read in a book:
“Hope,” she said, spreading her papers out on the table. “Have I ever told you how much I dislike that word? Think of what it means, what it implies. You have hope when you’re outnumbered. You have hope when you lack options. Hope is always irrational, Uncle.”
“Fortunately, we are not entirely rational beings.”
“Nor should we want to be,” she agreed. “At the same time, how often has ‘hope’ been the reason someone refuses to move on and accept a realistic attitude? How often has ‘hope’ caused more pain or delayed healing? How often has ‘hope’ prevented someone from standing up and doing what needs to be done, because they cling to a wish for everything to be different?”
from Rhythm of War, Book Four of the Stormlight Archive by Brandon Sanderson
This describes perfectly how I think about hope. And the last part is especially relevant for people with myalgic encephalomyelitis. Most people, especially at the beginning of the illness, go through a phase of not wanting to accept what happened. They hope they will recover. They hope that everything will go back to what it was. And because we were socialized to “fight our way back,” that’s what we try – and fail, because myalgic encephalomyelitis punishes effort.
So, it’s necessary to “give up hope.” As an example: I can hope that I will be able to walk further than 200 m soon. I can keep trying to do so, keep ending up in PEM and making myself worse. Or I accept that, at this point, I cannot walk anymore, get a wheelchair and gain back some independence, increase my range, and gain quality of life. “Giving up hope” in this scenario leads to an improvement because it encourages action.
So, next time you tell me: “Don’t give up hope,” I will ask: “Hope for what?”