A brief but spectacular view of chronic disease
Before this interview, I was definitely nervous and anxious, but I spoke a lot in public.
However, what is tricky about these kinds of interviews is that you never know when your brain is just going to fly away, and I won’t be able to remember what I mean. I will not be able to formulate sentences.
When I was 21, two of my roommates and I all had mononucleosis at the same time. They got better in about a month, and I hardly ever got better. After a year of being bedridden, I had a few years of semi-remission, but it didn’t last. It all came back with a second infection, pneumonia, and I was sick for three decades.
They called it chronic mono, then chronic Epstein-Barr virus, then chronic fatigue syndrome. And now they call it ME / CFS, chronic fatigue syndrome of myalgic encephalomyelitis. Most of us just call it ME
We are up to two and a half million in the United States with ME, 24 million in the world. We have no cure, no cure, and people can be sick and disabled for decades, often bedridden like me, some unable to take care of themselves or feed themselves; 80% of people with ME got it after a viral or bacterial infection like me, and 75% of us are women.
I might look vibrant and full of life right now, but what’s going on is that a lot of us with ME, all of us with ME have post-stress discomfort. It’s called PEM. And that means that after doing anything that requires energy production, we will often collapse. We have a disproportionate return on investment.
So after doing this interview with you, I might find myself bedridden and unable to move, literally. When you ME, it affects absolutely every dimension of your life. Many of us, our families and our friends do not believe that we are really sick. It is a terribly lonely existence.
Right now, there are millions of people contracting COVID-19 from the coronavirus, and some are not getting better. They stay sick with what’s called a long COVID. Many people with long-term COVID will likely be eligible for a diagnosis of ME after six months of illness because they have many of the same symptoms as we do.
But something really beautiful came out of it all. The ME community and long-standing COVID communities are helping each other. It’s beautiful to see that. It is as if the elders help the newbies, but the newbies have a lot more political influence and also help us.
One of the issues that we have had as a community is that there has been a faction of the medical establishment that has come up with and propagated the myth that this is not a real disease, it is actually a psychological state.
So, for example, in the 1980s, “Newsweek” had a headline on their front – they had a cover – sorry – as you can see my brain is starting to disappear, right? You can see this happening here.
Even now, as I do this interview with you, I can feel the brain fog taking over. And I no longer remember your question, and I no longer remember the beginning of my sentence. I don’t remember the point I’m trying to make.
The only thing I want people back home to take away is to believe someone when they tell you how they feel. Don’t reject them. Do not neglect them. Believe them and have compassion.
My name is Rivka Solomon, and this is my brief but dramatic take on advocating for people with chronic illnesses.