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.