Since I was nine, doctors have been telling me that I’m rare, that they’ve never seen another case like mine, that they can’t predict how my illness will progress. But after living with chronic illness for over twenty years, I can’t believe that that’s really true. There has to be someone else out there. If you are that someone else, let me know.
Twenty years of chronic illness have also shown me how little western culture understands illness. We wring our hands, we send sympathy cards, we follow updates. But do we ever actually confront illness? Do we ever open ourselves to the realities of the sick, without judgment or denial, without seeing it all as an aberration? For me, and for every other person* living with chronic illness, it is the norm, it is our reality. When you face pain or symptoms every single day, there’s nothing unusual about being sick. More importantly, there’s nothing to hide about it. I’ve spent many years trying not to show my pain, pushing through it with the big heavy steamroller of denial. But what purpose does that serve? Honestly, I’ve only gotten sicker over the years. So in the last year, I decided to try the opposite, to live my illness openly and to experience all my pain and sickness without pushing back. The jury is still out, but it just might be working.
If being sick is a core part of my self (which it absolutely is), then I cannot allow my sickness to be a negative force in my life. Self-respect and self-worth lead me to honor my sickness as simply my reality, not my burden or my shame. That doesn’t mean it’s all pretty, but that does mean it’s all true, and it’s all worth sharing. So I suppose I’m on a campaign to shed light on my own invisible illnesses, because I’ve had enough darkness.
*According to the CDC (http://www.cdc.gov/chronicdisease/overview/), about half of all American adults have one or more chronic health conditions. That’s about 117 million people in the US alone.
Leave a Reply.
children's librarian, Smithie, writer, reader, cook, gardener, cancer patient, medical oddity, PANCAN patient advocate, #chemosurvivor, #spoonie