Living next to a bustling, relatively safe urban park sounds pleasant, even idyllic, for someone who prefers city dwelling. For many years, the park outside my window, with its endless sounds and voices, bothered me little. But in the last 15 months since my remission ended, things have changed.
This last weekend was Memorial Day here in the U.S. The official start to summer, my favorite season. All my life, this has been one of the most celebratory times of the year.
This time, though, it was different.
photo by Shashank Sahay
A good part of my holiday weekend this year was spent on my bathroom floor, feeling the cold tiles against my face at the times I wasn’t inexplicitly vomiting. Outside, through the small, cranked open window, I could hear the rest of the world commiserating. Laughter, the smell of barbeques and even the occasional distant firework served as constant reminders of the joyful things I have been robbed of by this treatmentless illness. As I shuffled from the bedroom to the bathroom and back, the excruciating pain and nausea tore through me. I contemplated: is this all there is left? Endless pain and exhaustion that no doctor or hospital can help with? Going weeks on end barely once going outdoors? No prospects for any future? Should I just end it all now?
Then, my despairing thoughts shifted to something drastic but a little less permanent: gathering the strength to move house. Somewhere quiet. Somewhere shrouded and secluded. Somewhere where I never have to interact with another human being ever again.
Nothing in life prepares you for the imposition of chronic illness, and few cultural norms tolerate problems for which there are no solutions and no tidy ends. Our life experiences must be different from those of healthy people, and for most of us it takes many years to even begin to come to terms with a shift so tectonic and a loss so profound.
Chronic illness changes the shades and hues of the world. It scars the pristine with its haunting uncertainty.
Of course, I know it could be worse for me. For some with ME/CFS, driving has become an impossibility. I still enjoy this ability. Consequently, I’ve ended up spending hours driving around the Chicago area to the tune of many chronic illness narratives on audiobooks. It’s an endless search for identification, recognition and solidarity.
Recently, I was listening to What Doesn’t Kill You, Tessa Miller’s memoir of her struggles after being diagnosed with Crohn’s disease as a twenty-something. Snaking my car into a rare parking spot in front of my building, Miller uttered a line that struck me hard:
“Healthy people like to say, ‘this too shall pass,’ but what if this never passes?”
What if, indeed, this never passes?
The doubts I’m seeing regarding Long Covid not just in the general public but even among medical professionals has further tarnished the way I see the world. It’s beyond dismaying to see outdated, disproven therapies being tested rather than bona fide randomized clinical trials for biomedical treatments. The focus on symptom management is just another rerun of the ME/CFS fiasco of the 1980s and 90s. Learning how to live with symptoms will never, ever replace actual biological treatment that will give longtime sufferers their lives back. I see Long Covid being mocked the same way as ME was and continues to be. My hopes that the pandemic would be a rallying cry for us — those with Long Covid and the much-longer suffering ME/CFS patients – are gone.
Absolutely none of my emotional stock regarding my illness goes into new treatment development. Instead, I live on the hope that another long and full, albeit completely unexplained remission will come my way, as has happened in the past. However, as I pass the 15-month mark of this latest bout, it’s seeming more and more like those remissions are a relic of my past.
I wish, like all those with chronic illness, that I could go back to my pre-illness self. The one who wanted to live to be old, so I’d have time to see the world. The one who wanted to hike up mountains and cross oceans to visit ancient cities, but she is gone. In a world that gives me such little recognition for my suffering and no accommodation for my debilitating condition, I do not expect nor desire to live into old age. In such a callous world, I do not expect nor desire to see any more than I already have. ME/CFS has changed everything for me, and I don’t think I’ll ever be able to get back to who I once was.
I’ve also found that people are the same everywhere you go. The situation is the same: very few in the general population are aware of post-viral illness, and only a fraction of those few understand and appreciate how devastatingly life-changing they can be. Post-viral illnesses are invisible, and most people will only look at what they can readily see. So, if it can’t be seen, it’s not really there. So, if you feel sick but look fine, well then it sucks to be you.
So, indeed, my ME/CFS is very likely to not pass. Chances are I will never refer to this wretched disease in the past tense, something I dreamed of doing for many fruitless years. Perhaps one day in the distant future, ME/CFS patients will be lucky enough to develop their disease at a time when effective biomedical treatments and cures have emerged and what used to be a life-destroying illness akin to AIDS will be nothing more than a bug easily fixed with the proper treatment. For now, though, I think I may go house hunting somewhere in the backwoods of Wyoming.
—Bridget O’Shea