Together with hope and acceptance, positivity forms the triumvirate of most misunderstood terms in chronic illness spaces and in society.
In chronic illness forums, people share their ups and downs, their wins and defeats. I have noticed that when someone shares something upsetting, it is often followed by “But I remain positive!”
“My disability benefits were denied, but I stay positive!”
“I am in PEM, and my pain is so severe that I cannot even turn in bed, but I am positive I will be better soon.”
And I always ask myself: why this need to reassure oneself or the reader that, despite the awful situation, one remains “positive”?
There is nothing positive about fearing for one’s financial future. There is nothing positive about being in 8-out-of-10 pain and nothing helps. Why can we not simply let that stand?
I think there are two main reasons.
First, toxic positivity is rampant in society. Everybody, but particularly chronically ill people, is expected to be positive and optimistic that things will get better.
Second, people mistake factual statements for negativity. When I say, “There is currently no cure for myalgic encephalomyelitis,” that is a factual, neutral statement. It reflects the current state of medical research. But I have been told not to be so “negative” when I say that. Saying, “My disability benefit application was denied,” is also a statement of fact. That fact is upsetting, infuriating, scary, and capable of triggering any number of emotions. But having those emotions isn’t being “negative”; it’s being human.
The kind of positivity society expects — the sunny “I’ll be fine!” or “I believe I will be cured!” — is dangerously close to the irrational hope Jasnah talks about in my favourite Stormlight Archive quote. Unrealistic optimism, like unrealistic hope, can lead to inaction where action is needed, or to a distorted view of reality.
In people with myalgic encephalomyelitis, that kind of optimism can also cause deterioration. If a person has repeatedly tried to walk 500 m and ended up in PEM every time but remains optimistic that next time it will work out, they will most likely trigger another episode of PEM — potentially the one that leads to permanent deterioration.
Naming reality for what it is isn’t negative. It is the first step toward acceptance and toward a kind of positivity that does not depend on constant self-reassurance or reassurance from others.
I have always thought of myself as a pessimist, and I still do. In fact, I am proud of it. Because I expect the worst, I usually have a plan in place in case it happens. Then, when it does, I follow the plan and deal with it. I also have a deep conviction that, whatever happens, somehow, I will cope. If things take a positive turn, great. If not, I will handle it. Basically, I am not positive that nothing bad will happen but I am positive that, if something bad does happen, I will be able to deal with it.
So no, I don’t expect to go into remission from myalgic encephalomyelitis. Nor do I expect to deteriorate to very severe. But I know deterioration is possible, I accept that possibility, and I have a plan in case it happens.
I believe this is a more sustainable, mentally healthier, and more positive (pun intended) philosophy than saying, “I am optimistic that I will recover,” and then being shocked and completely unprepared when permanent deterioration happens instead of recovery.