As someone who has lived with chronic illness for over a decade now, something I’m commonly asked is how to “approach” someone like myself. Not physically approach, but how to broach the subject of an illness, how to gain information without offending or embarrassing, and how to help soothe someone’s pain.
People who I barely know, acquaintances, people online who have had a friend or loved one recently diagnosed, and the people in my own life who love me all ask me these questions. They are questions I never quite know how to answer. I suppose that’s because we don’t suddenly become part of some sort of sickly cult when we are diagnosed with a condition; we are still individuals who respond to change in our lives in our own unique and complex ways. There is no one-size-fits-all with an incurable illness.
I often feel unqualified to give a responsible answer to these questions. My own experience of chronic illness is far from linear. There have been more ups and downs in my journey than a defunct mattress.
I feel angry and afraid a lot of the time. I often don’t know what to do with those feelings, so like my ungainly bosoms in an old bra they often spill out at the most inopportune moments. I’ll find myself sporadically bursting into tears, feeling sorry for myself, then beating myself up mentally for being “weak,” all the while knowing I’m far from it. But like our physical strength we need to keep training our brains to ensure our heads are healthy too. This is easier said than done.
Chronic illness doesn’t follow any rules. It can pull the rug from under you when you least expect it, like that old timey pull-away-the-tablecloth trick where the dinner service is still miraculously standing but wondering where the hell the ground just went from beneath it. I’m that dinner service — shiny and a little wobbly on the outside but mainly confused and feeling untethered to everything around me.
I suppose, as I do with friends and loved ones of mine who are also sick, people want to “fix it,” or at least offer comfort in some way. Everyone has their own ways of offering this comfort, but the most enduring and reassuring is often just leaving chronically ill people with a feeling of security that you are “there,” even when you can’t be sitting at the metaphorical dinner table with us.
No one can fix someone else’s pain, however it manifests itself. But we can be loving and patient with one another. Life can often seem impossible, but just knowing we are seen and understood is comforting. Stand with us in our pain, don’t try to fix it. You’ll only end up feeling like a failure when you can’t. That just starts another cycle of pain no one wants or needs.
People with chronic illness don’t expect miracles from those around us; it’s often too exhausting and frankly unnecessary to audibly replay the emotions running through our heads. So don’t assume we don’t want to share; we’re often just too drained to go over it again. Simply stand with us (or preferably sit) while we ebb and flow with our illness.
You don’t even have to adjust the wobbly butter dish on our dinner table; maybe we’ve just adapted to it being that way. Give us time and be patient while we learn to live with an ever-changing version of reality. Hold a space for us in your heart and your life; we so desperately want to fill it.