Chronic Illness and Selfhood
Breaking the silence.
Posted Feb 15, 2018
Merriam-Webster defines “chronic” as “continuing or occurring again and again for a long time.” For many years following my Crohn’s Disease diagnosis, I explained the various interruptions caused by the disease with the phrase, “I have a chronic illness.” I said it matter-of-factly, without further ado or explanation. And it always worked as I intended—as a wall to keep people from knowing anything about my experience as a person living with Crohn’s. Nobody ever said, “Tell me more,” or “That’s tough,” or “How can I help?” I made it clear in my tone and body language that my chronic illness was a minor setback, a hiccup, a pesky footnote in the narrative of my life.
As I write this, I think about all the ways I have invalidated my experience, shrinking it down into something I could place in a locked steel box in my mind. “It’s not a big deal.” “Things could be worse.” “Whatever.” As a therapist, I work daily with people to unlock and open the steel boxes in their minds that contain the things they find unbearable to feel. This work has taught me a few things:
First, steel boxes take up a lot of room, crowding the space required for joy, spontaneity and authenticity to take up residence.
Second, steel boxes are heavy and carrying them around becomes exhausting.
Third, the experiences we confine to steel boxes are lonely shards of our selves longing for company. They want to coexist and interact with the other pieces of our selves, and they will be less painfully jagged when we free them to do just that.
Nearly half—45 percent—of all Americans live with at least one chronic illness. If almost half of us share this experience, why aren’t we talking about it? I can think of lots of reasons, most of them a variant of shame. We are ashamed that we are ill and so we don’t speak about it; this silence surrounding illness feeds back into our shame, reinforcing our seeming inability to speak.
This blog is an attempt to break that silence. We’ve medicalized chronic illness such that, if we talk about our experiences at all, we use the language of medicine. We communicate test results, hospitalizations, physical symptoms. What we tend not to communicate—what there seems not to be space for—is the emotional implications of living with chronic illness. We speak of blood tests, but not despair. We report bodily disruptions, but not anger. We talk about new medications, but not isolation.
I named this blog “Chronically Me” because I wanted to reclaim the word “chronic” from a meaning that has felt imprisoning. Yes, I live with a disease that is not going away. It has changed and continues to change me profoundly. But there is still a “me,” simultaneously maimed and made stronger by disease. I’m aware that this self—this “me”—has developed and changed, acted and reacted, survived and even thrived on its journey of illness. The blog will address the topic of selfhood as experienced through the lens of illness. How do we make meaning of our illnesses? How do our illnesses affect our relationships? How can we live well with illness in a culture that repudiates disease?
I believe strongly that the self develops in relationships. I hope to cultivate those relationships with this blog’s readers. To those of you who live with chronic illness: What would you like to see in this blog? What facets of your experience have gone unspoken? I look forward to getting to know you as we break the silence together.