When words fail, so too does recognition.

In The Invisible Kingdom, Meghan O’Rourke talks about the absence of recognition one receives as a chronic illness patient. Given the scale of the suffering patients must endure, this lack of recognition feels incomprehensibly confounding.

In ME/CFS there exists an unbridgeable gulf between the sick and the healthy. I see this issue in online forums every day: we tell others about our illness, but they are not able to conceptualize it. No matter how we craft our language, conceiving of our day to day, hour to hour existence is wholly impossible for an outsider.

Last week, I went to visit a friend at her house. In her living room, as her four-year old clattered in his pile of toys and jumped on the couch, I felt the distinct sensation that I was dying. It began in my toes and rattled through my body.

“I’ve had enough,” my body was telling me. “We have to go now.” And it wasn’t talking about leaving my friend’s house.

If I were to lay down at that moment and never wake up, it would have felt like the most natural thing in the world. It was far from the first time I’ve ever felt this.

With ME/CFS, every move is work. You awaken every day to a relentless, gripping paralysis of an incapacitation that defies anything you’ve ever known. Simply starting your day can take hours, and it’s a day you slog through, just as tomorrow will be, and the day after, and so on. ME/CFS is a disease that has no meaning and no end. It is one of the cruelest fates one can possibly be forced to endure. With no effective treatment options and very little concern in the medical community regarding any aspect of your well-being, you are left to endure this on your own.

Moreover, ME/CFS patients often report being expected to function on the same level as the healthy despite their atrocious, albeit invisible, physical state. This again drives home the point that you are on your own with this. Any words you’ve used to attempt to convey your circumstance have gotten you utterly nowhere.

How do you describe such an intolerable existence to a world that has zero understanding of any such experience? It is currently, sadly, not possible.

Despite my efforts over many years, my words still fail to convey the harsh, demanding and dismal reality of life for someone hobbled by ME/CFS. It is not unusual for us to long for death. The expenditure of energy it takes just to live is simply too exhausting. No human language will ever be able to convey just how tortuously depleting all waking moments can be with ME/CFS. It is a life that is untenable to live.

The atrociously high suicide rate among ME/CFS patients — at least seven times that of the general population — is a direct result of what happens when you take a disease with a worse quality of life than most cancers, ignore it, provide no treatment, then blame and alienate those who are sick and suffering with it.

But it’s not just the lack of treatment that leads to such hopelessness. The lack of recognition can be just as deadly. When people are abandoned to suffer on their own with only each other to lean on for support through social media, the alienation can be too overwhelming.

Another thing that happened last week was that I had a couple days when I wasn’t feeling literally close to death. I’ve learned, though, not to take these good days or good moments too seriously. My body has too often fooled me into thinking I’ve somehow found a way out, or maybe the ME/CFS has finally decided to remit. I simply can’t set myself up for the disappointment that will follow.

I call these Mirage Moments because you think you’ve found a way out but when you get to the exit, it’s gone. I know this sounds pessimistic, but I’m only trying to protect my mental health. I personally don’t consider a remission to be real unless it lasts at least two months.

Still, I see others and I watch their enthusiastic gestures and I wish to have that kind of energy again. I remember planning for vacations, the anticipation, never once thinking I may not be well enough to go. I remember arriving at my full-time job at 8 a.m., feeling rested and ready to take on the day. Now, I’m not sure if I’ll ever feel or do any of those things again.

My life, at least for now, has been stolen from me. Very few people in my life can conceptualize the profundity of this. I’m not blaming them. My experience is very far outside of the range of someone who’s never experienced untreatable illness.

I often think of what would happen if we could simulate ME/CFS, or Long Covid for that matter. If there were a way to give it to someone for a day, a week, an hour. With all the current discussion around AI technology, perhaps one day this will be possible. That would lead to much better recognition for patients and for us, recognition would transform everything.

—Bridget O’Shea