When an illness starts and doesn't end, there's a period of time I call limbo prior to getting your diagnosis. Where everything in uncertain. Where your body seems to be falling apart, but doctors can't put a finger on why. Some doctors are nice about it and tell you that they wish they knew and to keep fighting for answers because you shouldn't have to live this way. Others will blame symptoms that couldn't possibly be caused by depression on depression and tell you to just go outside and enjoy the fresh air and just accept that this is how things are for now.
But how are we, as chronic illness patients, meant to just accept things for how they are when we have no idea why our bodies are falling apart? How are we supposed to "keep on living" when we're barely living at all due to debilitating symptoms?
Personally, I struggle with ataxia, tremors, trouble walking, a neurogenic bladder, and seem to be on a slow cognitive decline. Some say parts of it can be blamed on a medication I've been on for years but tell me that it wouldn't cause everything, and the others shrug their shoulders.
I don't know if I will be able to walk without my walker anymore in a few months. I could get better, I could stay the same, or I could get worse. My bladder muscles could go on strike at any second. But when you don't have a solid, strong diagnosis no one can tell you your prognosis, and that is scary. The unknown is the hardest part. And even when you do get that full diagnosis, the prognosis still could be unknown. There are actually very few illnesses with a clear prognosis. The majority of chronic illnesses are unpredictable. It's impossible for doctors to say what the future might look like, even with the diagnosis. The same illness in the two people can progress in two very different ways. This is why as a chronic illness patient, the future might always be impossible to foresee. And for some, including myself, that's unsettling.
So like all patients do, we wait. We wait and hope that, sooner rather than later, the unknown won't be a thing anymore and we'll finally fully understand why our bodies aren't cooperating; we hope we'll be lucky enough to get some sort of idea of what our future will look like. And we keep fighting.