It was 12 years ago yesterday, October 5, 2009, when I woke up and quickly realized I had come down with a flu or something. Why do I remember such a mundane detail all these years later? Because that was the day my life changed forever.
I went for many years thinking I was alone in my illness. I thought I was mostly alone in my anger, confusion and despair. Occasionally I would read something about ME/CFS patients who were furious about the lack of treatment and I felt a kinship with them. Then I would go into remission. Whenever my illness came back, this lonely, confounding situation presented once again.
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.
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.
