Words are amazing, aren’t they? Even the same set of four one-syllable words can evoke such different emotions in different contexts.
I hear the set “just life your life” occasionally. Sometimes they’re incredibly heartening — indicating that some condition is in remission, or that I can be remotely monitored safely now. “Just live your life!” a doctor says cheerfully, clearing me to continue with a regimented lifestyle, a diet without caffeine or alcohol, and daunting list of medications — but alive. We speak the same language in that moment. Bubbles of bright yellow sunshine rise in my heart and I walk out of the door whistling, overjoyed and amazed.
Someplace, I’m sure, there are bouquets of flowers raining down and shopping malls full of beautiful people are breaking into spontaneous song-and-dance routines, à la Disney, at those glorious words.
More often than not, though, “just live your life” is some sort of remonstrance from a non-medical professional, a person who has seen some of the effects of my illness but yet has somehow avoided noticing the full, devastating, exhausting impact of multiple chronic conditions. “Just live your life” doesn’t mean “enjoy the current life you have.” No. The life they have in mind is a “normal” life — a life without medication schedules, doctor’s appointments, tests, physical therapy, and diet restrictions. This happy little fiction is an option for you, because all of the symptoms and diagnoses and test results are the real fiction. You could live a “normal” life if you really wanted to.
This troubling phrase can crop up in all sorts of situations, but usually it begins with some discussion about illness. A common scenario goes something like this: Chronically-ill Girl (CG): “I’m worried because I am waiting for very important test results. If they’re positive, it means I have a horrible, life-threatening, but still very treatable condition. But if the results are negative, that means we still don’t really know what’s wrong.” Positive Person: “Well, at least after this there can’t be any more tests, right?” CG: “No. There are at least a few more we can run, and maybe then we’ll be able to figure out what’s happening.” PP: “Well, I don’t think you should do any more tests. I think if they worry you, you should just go live your life.”
“Just go live your life” came tumbling out because, somehow, the speaker doesn’t see that your quest for answers and health is, actually, a form of living. It was unintentionally but casually cruel, a reflection of what Positive Person was thinking. The endless cycle of tests might be horrifying and grueling to both parties, but for Chronically-Ill Girl the reminder that there are still other tests that can be run might be a thread of hope. Positive Person, on the other hand, sees further medical testing as merely an inconvenient option that would hold back normal, enjoyable life. It doesn’t have to be medical testing, of course — there are endless variants that can produce the same phrase, ranging from discussing food triggers, vacation plans, career expectations, or even a trip to Wal-Mart.
After one of those conversations, I’m never sure if the crushing blackness that overwhelms me is because I want that “normal” life so badly, or because I have misjudged my confidante. Or perhaps it is because, once again, I must face the agonizing questions that almost everyone faces when struggling with chronic, painful, debilitating, and sometimes long undiagnosed medical conditions. Why can’t I just decide to be normal? What if everything is really just my imagination? What if all I had to do was really want to be well? What if they never find out what is wrong? Is there any point in chasing down more doctors, submitting to more tests? Is there any reason to keep fighting at all?
What if this is all there is?
“Just live your life!” they say. I don’t just drown in sorrow. Like obsidian, the blackness inside hardens until I shatter.
“Just live your life.”
There are many kinds of existences. Just because someone doesn’t understand that your particular version of living is going to involve doctor’s appointments every week doesn’t mean that it isn’t living. Live. Breathe. Enjoy what you can. Survive what you can’t enjoy. Fight with me for awareness that just because one is ill, it doesn’t mean that they are not living.