Bridget O'Shea

At first, I’d been on a plane, in a window seat, grounded and waiting to deboard. I thought this for a long time. Now, though, the scene takes me to the backseat of a car – my parent’s car – on the highway, a grey winter sky over the flat Midwestern US.

My personal belief when it comes to Long Covid is that if you’re either lucky enough to recover naturally (like grifter Paul Garner) or are one of the very rare cases in which meds, supplements or some combination has gotten you back on your feet, that is fantastic. However, far too many have sunken into the thick and insufferable swamp of ME/CFS.

This year, around mid-May, I was able to obtain a prescription for Maraviroc, an antiviral originally developed for treating HIV. It was not cheap, even with a steep coupon, but I’ve been utterly desperate. Several accounts I read online left me skeptical. I even began to suspect I might be getting scammed. With ME/CFS, you learn to distrust every single aspect of the medical establishment.

Most of us in the chronic illness community are familiar with this dreaded phrase. The model, of course, relies on the patient to start thinking differently in order to alleviate symptoms. Sharpe, who described a “vicious cycle” of depression, fatigue and deconditioning, touted Cognitive Behavioral Therapy (CBT) as improving patients’ lives and getting them back to baseline functioning. I’ve never seen one single patient testimony backing this claim.

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.

At the start of the pandemic, for the first time ever, I had real and tangible hope that the landscape of post viral illnesses would soften into something that is more socially acceptable. To do this, though, the public had to properly portray the pain, suffering and isolation that are so intrusive when ME/CFS or Long Covid move into your life and suffocate you.

The lack of recognition and transparency vastly increases the suffering of those of us with poorly understood conditions like ME/CFS and Long Covid. Post-viral diseases need to be treated like cancer. We need national research centers. We need massive funds moved into research and drug treatment development.

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. 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.

Along with having to wait more than a decade for a proper diagnosis, one of the most unacceptable things about my illness has been having to wait even longer than ten years for any type of non-psychiatric prescription medication. Most of us wait years, some wait decades. Some are lucky enough to wait f or only several months. However, no matter how long one must wait for legitimate treatment, whether that treatment will work or not is an agonizing matter of chance.

ME/CFS has isolated me from the rest of the world in a way I could never have previously imagined. I often have a sensation of living underground, with dark and ferocious truths that only myself and other sufferers can truly see. Friends, family and acquaintances might say things about how when the weather turns nicer, we might feel better. Or maybe there’s some kind of medicine out there that can cure this thing. But those of us living in the swampy dwellings of the underground world, with our terrible experiences with doctors, snake oil salesmen and toxic positivity, among many other things, know the sobering truth: treatment does not currently exist.

Lately, I’ve felt particularly driven to weigh in on my views of the DIY nature of both ME/CFS and Long Covid: ignored and trivialized diseases which cast sufferers into unfathomable trenches in which we must hand-build our own defenses with whatever dirt, mud, sweat, tears and sheer desperation comes our way.

I am so tired of fighting for proper treatment. At this point I’m not sure if I’ll see anything effective in my lifetime. It’s so disheartening to see the psychiatric field continuing to have so much fun while we lay in tangled, sweaty sheets. Awake but not alive. Outside our curtained windows, dawn becomes night becomes dusk and night again. Asleep, dead, undead and losing all hope: this is no psychosis. This is real. We are captive in this land of crepuscular doom.

Many of the semantics used for frightening diseases use Greek or Latin roots. These ancient, respectable words initiate immediate senses of dread for many non-sufferers. But the worldwide medical community has failed to adequately name an illness that shares alarmingly similar functional impairments with AIDS, and the consequences have been beyond devastating.

It’s a sad, sad fact that chronic illness and friendships are a dubious combination. Particularly for those living with poorly understood, long-lasting conditions, ‘friends’ often show their true colors right when we need them most. Our entire perception of reality takes an insidious turn as we watch this vital resource diminish in perfect disharmony with the ever-increasing need.

The process of finding true, effective biological therapies for patients with post-viral illnesses is moving like a tortoise on tranquilizers and it is unacceptable. We are tired of feeling, ourselves, like the only way to manage our symptoms is to move about life like those giant-shelled beings, moving exponentially slower than we did pre-illness.

For those of us with poorly understood, vaguely-named and stigmatizing illnesses, our reasoning is sometimes the opposite: we understand our conditions and the doctors are the ones who can’t or won’t become educated. We are often much more informed than our healthcare professionals who tend to prescribe therapies we know are useless and medications like antidepressants that we know are going to be ineffective.

“In my darkest moments, I told my husband that if I didn’t get better, I did not want to live like this,” Ferrer had previously written on her blog. “I wasn’t suicidal, I just couldn’t see any quality of life long term and there was no end in sight.”

A September New Yorker article on Long Covid by prominent physician and author Dhruv Khullar caught my attention right away. The story, headlined The Damage Done, addresses the serious, widespread and long-term risks of post-viral illness. I immediately tore into Dr. Khullar’s story.

I created this blog because I feel like I cannot talk to anyone outside of the chronic illness community about my disease, my remission or my fear of relapse (which usually occurs in the fall). It’s upsetting and frustrating not to be able to talk with even my close friends about this huge and pervasive part of my life.