A few people have been sharing the piece by 60 minutes about COVID-19 Long Haulers, linked below. The following are a few reactions I have. They are no researched, they are not based on my usual high standards of sources or even reason, so take it all with a large grain of salt, but I thought it might be helpful for those to understand the perspective of an already disabled person, specifically myself as a disabled veteran, to the information presented.
My first reaction was essentially bitter irony. These people are describing symptoms that I and other people I love and know have been forced to deal with for years with little or not help from the outside world. A dark, angry part of me thought, "well, maybe now you can understand what it's like to be one of us, disabled in a way that's not easily seen." The fatigue, the inflammation, the headaches, the tremors, the loss of balance, the issues with memory and cognition, I've had to deal with all of these since before my discharge in 2014, and they've only gotten worse since, but the official statements from the parts of the government that are supposed to help me amount to essentially, "we think you're lying." They can't see anything on the MRI's. They can't see anything on the X-rays. They can't understand why I'm not just doing exactly what they say I should be doing, so they deny me any semblance of help beyond what they *can* see clearly. With the VA, that means a partial disability rating. With SSDI, despite my having paid into it and thus being entitled to it legally, I have received nothing but disrespect, discrimination, and denials. My story in that case isn't even remotely unique, tens of thousands of people have died waiting for SSDI or VA benefits to meet their needs, not charity, but stuff they earned.
My second reaction was one of anger. It doesn't take long while reading the article or watching the video before you realize that the narrative of a "99% survival rate" is bullshit, as is the narrative that "only those at high risk need to be protected." One, I and everyone I live with is at a significantly higher risk than average, though not at the highest risk. Two, I am dead center in the median age for these long-haul symptoms. I can barely function day-to-day as it is, if I end up with symptoms like those described in this piece, I won't be able to do even the barest minimum to keep myself alive. Without a massive amount of help, I'd die slowly, likely due to starvation or dehydration, in my bed knowing that the rest of my family will soon follow. If you think you support the troops and veterans but don't wear a mask, you don't support the troops and veterans. You hate us because you'd rather your comfort over our lives. Even if it's just one veteran you kill, one life is more important than your comfort for the fifteen minutes you spend shopping, Karen.
My third reaction was one of sincere awe and inspiration. Hearing the account of the doctor who, while being a long-hauler herself, pushes through everything to keep working and keep helping, was inspiring. What she described as how her day would end, severe headaches, painkillers, and curling up and hoping everything will be okay when you wake up, describes much of my life in the last few years. It's inspiring to me to see that someone is still fighting through all that, possibly as bad as I have to or maybe a bit worse, and still pulls a full shift at her job. I can't even get through more than a couple hours of concentrating on something without being done for the day, but someday I hope to at least be as strong as she is, so that I can go back to work. I hope, but without the help I was promised as a veteran and as someone who paid my share of payroll taxes, hope is all it is, not an expectation.
My fourth reaction was another set of anger, because they are unintentionally pushing a broken narrative that many "hard science" types have been pushing for much longer than I have been alive. "All in your head" is a dangerous narrative, inaccurate and harmful. It literally kills, because it's the narrative that all too many doctors believe when trying to diagnose someone. Psychological and Neurological symptoms are not separate from one another, nor is the body separate from the brain. There is nothing that is simply "all in your head." Even the things that originate from a problem in the brain, like psychosomatic pain or migraines, are not all in your head. They immediately affect other symptoms, starting with the nervous system, but quickly affecting the endocrine system, the gastrointestinal system, muscles, other organs, even skin. Even if this was "all in their heads," it's not a lie, it's not fake, it's something real that needs to be treated as such. Frankly, any doctor who thinks that they can simply explain something away as a symptom of a psychological disorder and thus refuse to acknowledge it except to tell the patient misunderstood oversimplifications of coping techniques should probably go back to school for a year or two, and learn how psychology and neurology overlap, and how neurology affects the entire body. It's infuriating that in order to be taken seriously, they feel they have to repeat that phrase, "not all in your head," thus making it even harder for people like me to get any form of help.
The long and short of it can be summed up with a few less than charitable phrases that went through my head:
- Congrats, you're dealing with less than half of what I will deal with for the rest of my life as the world refuses to even acknowledge my pain, and you'll get much more help than I ever will because the cause for your suffering is a buzzword.
- Wear a damn mask. Your idiocy is killing people, and making other people's lives not worth living. Believe me when I say it's better to be dead than to wish you were dead, and it's better still to be neither, and by not wearing a mask you're forcing people into those first two states. Murderer.
- Wow, maybe I can get there someday.
- Will you please listen!? Your head is part of you, your psychology affects everything about you, stop saying "all in your head" as if that's somehow disqualifying as a problem!
That's all. Again, take this all with a huge grain of salt. This is more emotional than reasonable, but if it helped you or anyone else to better understand the pain a lot of people are going through, whether it be from COVID-19, psychological issues, other disabilities, or anything else, I'll count that as a win.
Link to the article: https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-22/
