One cannot talk about hope without talking about acceptance, because acceptance is often mistaken for “losing hope.”
The reality couldn’t be farther from the truth. Acceptance and hope are not mutually exclusive; the question is, “Hope for what?”
Ever since I was a small child, I have always struggled with change and with things ending. And maybe that is why I eventually adopted a philosophy of radical acceptance. If change is inevitable, if you cannot prevent something from ending, embrace the change.
Again, that doesn’t mean “giving up.” In a society where toxic positivity is rampant, including in chronic illness spaces, many people don’t understand radical acceptance.
I was once told by a fellow patient not to call it “radical” acceptance because that sounds too extreme. Well, I’m sorry, but that is what it’s called. I did not make this up.
But what does radical acceptance mean?
It doesn’t mean you have to like your circumstances. You can hate a change that was imposed upon you. You can grieve what you lost. You can be angry and rage at whatever you believe in, or even at the universe itself.
But once the first emotional outburst is over, you take stock. You look at reality as it is, not as you want it to be. Then, you find ways to work within this reality.
I have to put a disclaimer here: myalgic encephalomyelitis is the illness with the worst quality of life, and having even a semblance of a life at all requires a certain remaining functionality, lots of privilege, and help. Many patients have none of these. The worst affected people spend their lives in what is essentially solitary confinement, often without the support they need.
When I say “work within reality,” I am speaking from a position of privilege: I have something to work with in the first place.
As an example: I accept that I cannot travel anymore. But I can still leave the house occasionally and have a “passenger princess radius” of about 1.5 hours. So, we explore our region. We have small adventures within my limits. It’s not what I was used to, and it’s not what I would be doing if I were healthy, but it is what I have.
Radical acceptance needs support, imagination, willingness to experiment, and the ability to see reality as it is, no matter how harsh. In my opinion, it is the basis for good pacing.
Another example: I used to be a marathon runner. I used to walk everywhere. Five months into the illness, I could hardly walk 500 meters anymore. Still, I hoped I would improve to the point where I could walk everywhere again. After 10 months, I finally “gave up” and bought an eBike. It was the first time I could leave the village under my own power again — or rather, under the bike’s power — and it was incredibly freeing.
Still, it took me three more years to accept that I might benefit from a wheelchair in certain situations.
That is another disclaimer: radical acceptance isn’t something that you achieve once and then it is done. It’s a process, like grief. One might accept certain aspects of a situation while ignoring the reality of others until they can no longer be ignored. Then one accepts those aspects too, and on and on. It’s not easy, but it is worth it, not only for chronically ill people.