I recently wrote about labels and shifting/undefined diagnoses. About my frustration at new information, starting again and the continued vigilance and research necessary. I deleted the post as a couple comments just plain ticked me off. And, I choose not to go into my medical details to clarify. And, I'm raw and exhausted as I begin again on more medical records chases, new doctor referrals, and new research while being the sole provider taking care of myself and working under less than perfect health conditions.
Philosophically I can appreciate the assertion that boxes and labels don't matter so much in regards to what those of us navigating chronic illness experience on a daily basis. I've often said that I feel more connected to people struggling with chronic illness and trying to function on a daily basis than to a label. Partially because I've been shocked at how people with a shared label assume so much about each other. Take labels such as Lupus, Myasthenia Gravis, or MS which can range from mildly life-impacting to life-threatening. Yet glib and all-knowing comments indicate huge assumptions about the other person's symptoms, functioning, resources, and the thundering impact change might have on their life. Yes, on a philosophical basis the label doesn't matter for the person managing their unique version of one or more chronic illnesses on a daily basis.
Meanwhile back at the reality ranch, that of keeping a roof overhead, remaining medically insured and actually being treated. Labels are hugely important in the navigation of the medical system, disability system if necessary, employment system and such. Not only for validation purposes, but most importantly, for appropriate treatment options. Some that actually might make one better even if for a while. If one is not at the end of the treatment options road, this is huge. And, I'm not at the end of the road -- whatever road that may be. So, continuing to seek a label is not grappling after some sort of elusive validation but actually a sign of not giving up.
In the last two years, I've questioned different docs enough to self-refer many times. Each and every time that proved to be a good move and uncovered something significant -- in three cases it was quite significant. I will continue my research for answers. I will express frustration along the way at the insanity of what I'm having to do. That I do this does not preclude my deep gratitude for so many things and people along the way. Anyone who knows me gets this.
I'm angry right now. I don't plan on making it a lifestyle. I plan on allowing it as a short-term houseguest for constructive action. I've spent a lot of time in in the past in what I call the "ashram of life". I learned many useful tools but also denied the value of "negative" emotions. I now believe that emotions such as anger and guilt are quite effective forces when channeled into appropriate action with the right attitude.
Deep frustration and anger that is experienced, but not wallowed in, is not the antithesis of spirituality, gratitude or even acceptance. Or so I believe.
