This week's New York Times Health section is a veritable feast of topics for those of us in the chronically and/or seriously afflicted world. This essay about the concepts of health and sickness especially resonates with me because it's something that has been on my mind a lot lately. Upon reading it, I immediately hearkened back to a comment my rheumatologist made on my first visit when she pronounced me as 'otherwise healthy.' Logically, I knew what she meant - aside from the RA, I was in good shape and was, basically, healthy. But I still find no end of irony and plain bizarreness in such a statement. After all, how can a person with a chronic, possibly degenerative illness be considered healthy in any way? How can you be healthy if you have to be on drugs for the rest of your life?
Yet, in many ways, it is still so deeply ingrained in me to consider myself healthy that I am frequently taken by surprise when something happens to sharply remind me that I'm not. For instance, while on the internet one day, a pesky little ad came up soliciting 'young women in good health' to be egg donors, and although I'm not remotely in the market to become an egg donor, it hit me that I no longer fit into that classification. I may be young and a woman, but nobody's gonna want my eggs but me. It's silly, but in that moment, I felt rejected, unfit and, well, sick in some larger sense of the word. It didn't feel like a label that should belong to me when I haven't even hit 30. I mean, come on!!!
Granted, it's a big blow at any age to find out you have a disease, but for me, it feels like a particularly striking blow given that I am so young and not yet in a stage of my life when I would have considered my health to be fleeting or in jeopardy. Health is supposed to belong to the young and sickness to the old, or older-than-me, at least.
Back in the dark, deathly days of last winter when I was completely in the grips of RA, I did feel and think of myself as sick, but now that the enbrel is working its magic, I often feel healthy. But, since there is no cure and I still have RA, am I technically still considered sick? What would a doctor say? Are sickness and health mere feelings, outside perceptions or actual states of being? And how do you determine the line between the two when so often it is blurry?
When I found out I that I had a nameable, knowable disease with no cure, it felt like a line had been drawn in the sand between being healthy and sick, and I had no choice but to step across it. It was the proverbial Before and After. But I have found since then that the line isn't so impermeable or solid. To most people, I look like I always did. Even on the days when I feel sick, I'm able to pass as a perfectly healthy person on the outside. I don't have any telltale signs that automatically mean sick to other people, and yet I do have this horrible, awful disease.
Sigh. It's all a bit of a mindf***, isn't it?