Have you ever had someone tell you you “must” do something for your illness, but your doctor has advised against it? Or, had someone say, “I know someone with [your illness], and he/she is really healthy.” [implying, "what's wrong with you?"] Or had one person say, “I don’t have any problem taking [medication],” when another tells you, “I couldn’t take that because of the side effects.”
If so, then you know what some have great difficulty understanding: With chronic illness, one size often does not fit all.
This would be just a statement if it weren’t that it also poses challenges to each of us. Socially, medically, spiritually, because each of us will have different symptoms, degrees of those symptoms, and all sorts of other considerations, it can be difficult to help others understand what we’re going through. To some, for example, “I’m tired” is answered with “take a nap and you’ll feel better.” But as a lupie, I can say that, when I’m in a flare, though I might nap for hours, it is rarely restorative. “Staying out of the sun” has different meaning to different people, too. For some, sitting in a park in the shade is what this means. But for the highly ultraviolet-light-sensitive lupus patient, even that can stir up a flare.
With complex illnesses, having quality, working relationships with our medical team is so very important to managing the individuality of our symptoms. And, having good care with doctors and others who truly “know their stuff” is essential, too. Switching one generic med for another, treating with one antibiotic over another, and other things that might seem routine to some formulaeic-driven healthcare workers can be problematic for some patients whose chronic illnesses need more finely tuned attention than a “one size fits all” approach will give.
It can be tiring to have to explain so many things on so many occasions. How well I know! Sometimes, when I have to explain more specifically why I cannot do something, or how my symptoms and illnesses are intertwined, I worry a bit that I’m sounding “picky” or “wimping out.” More than once, someone has said, “I’ve never heard that,” or, “oh, really?” when I’ve tried to explain a specific aspect of life with lupus and the other conditions I have, and pick up on the doubt behind those statements. And sometimes, especially in social situations, I struggle to join in the conversation if it turns to the latest hair care trend (I’ve lost all my hair due to my illnesses), planning a group activity outdoors, etc.
But despite the challenges of being uniquely you and me, the individuality of life with chronic illness is yet one more manifestation of the uniqueness that exists in God’s eyes. Truly, He knows each of us by name, even before we were born, and His love falls upon each of us as precious, individual lives created in His image.
No, for us, one size often does not fit all. And that makes living all the more un-specifically special!
Blessings for the day,