People who do not have to live in broken bodies do not understand that broken bodies do not follow guidelines or rules from articles online, medical studies, or established clinical guidelines.
People without broken bodies do not understand how hard it is to find competent doctors and even if we do, each of us is different, with various comorbid conditions that complicate things, as well as genetics, and various environmental exposures with which to contend.
The rarer or more obscure your disease and presentation, the more masterfully skilled the physician must be to even stand a chance at helping you. But there aren't many of those, so we settle, desperately, for those who simply do some of what we need them to do to stay alive. And if you are lucky enough to see the best of the best, you learn, just like you, they are human. They are not the omniscient superhero you see in medical shows.
Medicine is extremely limited. I have witnessed how devastatingly limited. Specialists are even more so. It is rare to find one who can digest your whole picture. This is by design. I have learned the design is ripe with fatal flaws. The design fails us every day.
Every step of the way is an uphill battle just to get the minimum care we need to survive. Quality of life is elective. It is not a goal required by medicine.
When you find yourself living in a body so broken no one can fix it, and managing it is a Herculean effort, you are faced with a grief so profound it forever alters the architecture of who you are.
Your disease beseeches you to let go and say goodbye to the person you were before and swallow a grim reality daily. The loss arrives with no instructions. No shortcuts. No fast forward button. It levels you with an existential reckoning like a tsunami. And though you are beyond every definition of exhausted that has ever been said, you must swim.
And so swim you do. Just keep swimming.
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