Among several other illnesses and disabilities. There’s no point to it. It is what happens when the fight or flight response can no longer shut off. It is exhausting. It is terrible. It has robbed me of much of my capacity for simple or enjoyable tasks like filling out forms, dancing more than once every three months, and walking unassisted. It makes it harder to concentrate. It is not taken seriously.
I finally broke down and got a cane to help me get around when I have a flare. I likely will need a wheelchair soon. It, along with my other illnesses, are not considered real "disabilities" and so I am denied the care and help I need on a regular basis. I should be on something like SSI but no longer have the spoons to complete the forms and since the county "helped" me by getting rid of my insurance I neither have a competent doctor nor any treatment for any of my illnesses.
I have been called lazy. I have been kicked out and rejected despite my greater need for shelter and help. I have been denied SSI and other assistance, even sabotaged, because of misinformation and ignorance about my condition. I have been accused of being on drugs when I needed emergency assistance. I have been called "healthy" when I am so clearly not.
I have been surviving these awful past few years utterly alone, as best I can, while people actively hurt me and my family. I have been made more vulnerable to those who want to hurt me, and unable to defend myself because despite being a good and fierce and unafraid fighter, I have been physically unable to do so.
I have found a world hostile to my existence, set up as if I have time to search for parking when my body is screaming, as if I always have the intact executive functioning to socialize endlessly, as if only the fully paralyzed require assistance, as if I am not doing my best, as if I brought this on myself, as if I can afford to work like everyone else at a "normal" job, as if I am just the worst and laziest piece of shit to ever exist.
As a Black afab, it was miraculous I was ever diagnosed at all, and reluctantly at that. Even still, I am not believed. I am given no help. I am treated as lesser and useless and stupid and lazy.
I have fibromyalgia. It will never heal. It always hurts, in thousands of different ways, but it has so many other terrible facets, too. It is eroding my quality of life rather rapidly, but no one seems to care.
This is my birth month, and for my birthday I get to celebrate by moving for about the 50th time in a year and a half - completely on my own, and likely still without any of my illnesses being treated.
Even now, I don't expect you to understand or believe the pain. You'll probably suggest something that doesn't work or that is just plain impossible. I will keep going because I have no choice, but the borrowed energy will remove time from the end of my life.
Folks with these illnesses actually need to live like middle-upper class yte ladies, but we are told we are burdens and punished for our pain instead. We are told we are no fun. We are blamed for eventually becoming impoverished if we weren't already. We are called leeches and deceivers and drug addicts and fakers. We are ticketed, mistreated, fined, abused, ignored, evicted, and killed.
It is so much worse than you think, and yet we go on.