I Can’t Define How I Feel About My Chronic Illnesses, And That’s Okay
I hand over a vial of urine to the nurse behind the Perspex screen, a woman with a warm Yorkshire accent and a collection of pin badges on her scrubs. She makes a joke about how they “love wee” here, and I laugh even though I’ve heard it before, because I am desperate for anything other than deathly seriousness. Then I take a laminated number, as if I’m getting school shoes fitted, and wait for it to be called, so they can weigh me and take my blood.
It’s the third time I’ve been here this year. In some ways, the routine feels familiar. I throw out my arm for a blood pressure cuff, or a needle, without much thought. In other ways, I still feel disoriented; never knowing where to park, how to get to the right building, or how I should talk to people who are ill, even though, technically, I am one of them.
Not much has changed in the last year. I work the same job, rent the same house, have the same family and friends. The only thing that’s changed is that I am now somebody with kidneys the NHS is “concerned” about, and that I have to avoid bread like it’s anthrax. Being diagnosed with coeliac disease and chronic kidney disease at the same time, after casually calling the doctor about occasional stomach aches, left me bewildered. Whilst these illnesses are life changing, they are not a death sentence, or a ‘big deal’, in the grand scheme of things. Though as is often the case when we try to locate ourselves in that elusive grand scheme, I had no idea what I was supposed to feel.
Before, I was not a divided person. I took pride in my decisiveness, and my ability to dissect, understand and articulate my own feelings. That was until chronic illness split me down the middle, like a kitchen knife through an overripe avocado.
Becoming floppy, wishy-washy and emotional were unexpected side effects. Would I keep my illnesses a secret, I wondered over the following weeks, finding a strange comfort in quietly powering through? Did I want to be told I didn’t “seem” ill, to be praised for my ability to get on with things? Or would I seek to integrate this new part of my life into my identity, joining support groups and proudly putting my diagnoses in my Instagram bio? Would my illnesses be a badge of honour, or something I swept under the rug in an attempt to be strong? Both seemed equally possible, but it felt important to stop getting upset and make up my mind.
It’s important to acknowledge that, unless I’m in a situation with food, I have the luxury of deciding if and how I’d like to disclose my illness. People with visible illnesses, or with more support needs, may not have this choice. For them, being vocal and proud about their illnesses may be necessary not only for their mental wellbeing, but for their safety and access to the world around them. However, for those of us that inhabit bodies in that strange grey area between full health and serious illness, there’s a lot of room for how we want to interpret or live with our conditions. I assumed I’d choose an emotional lane and stay in it. Instead, I find myself changing direction about twenty times a day, pulled back and forth by the uncertainty of what it means to be ‘sort of’ ill.
Grief destabilises you, and being diagnosed with a life-changing illness (or in my case, two at the same time) is a kind of grief. I mourn the twenty year old version of me, who lived off raspberry vodka, garlic pizza bread, and three or four hours of sleep a night. I miss the time when I didn’t think about my body this much, when I was squeamish about blood. I try to get on with my day ignoring the dark cloud of unresolvable fear that hangs over me, its shadow a reminder that I’ll never be cured, and I could get worse. As with grief, there are dizzying highs and lows. Overwhelming sadness punctuated by the relief of a joke, like air released from a taut balloon. A giddy gratitude for all the wonderful things in my life, undone in an instant when someone asks me, in a tender voice, if I’m okay.
If anyone else described this to me I would, of course, tell them it was normal. Yet for some reason, defining how I feel about my diagnoses has seemed essential. My anxious brain demands a finished product, something I can digest and turn into wisdom and perspective.
Perhaps it’s a side effect of being in my mid-twenties, part of a generation obsessed with horoscopes, Harry Potter houses, and Myers-Briggs personality types. I have to know not just that I have illnesses, but who I am with these illnesses. If only there was a BuzzFeed quiz with a whimsical title like “pick out 3 outfits and we’ll tell you your chronic illness vibe.”
Of course, no such litmus test exists. The things that happen to us, and the way we feel about them, are far too complex to neatly wrap up. Instead, when faced with traumas, big or small, we’re forced to let go of figuring out what we feel – or at least loosen our grip.
The question of how we coexist with difficult feelings appears in a lot of spiritual and religious thinking. Though I’m not inclined to turn to social media for personal growth, when I saw a quote by the Jamaican teacher Mooji shared on Instagram, it felt the closest I’ve come to an answer. “Feelings are just visitors,” he said. “Let them come and go.” It’s a sentiment rooted in Buddhism and, more recently, one that underpins contemporary mindfulness. Whilst I’ve always been too fidgety for meditation (and too stingy for the Headspace app), this approach intrigued me. If my emotions don’t define me, I realised, then there’s no need to analyse them. It was a liberating idea.
Most recently, the arrival of a letter from the hospital (a simple appointment reminder) reduced me to tears. Despite being mid-sob over the keyboard at my desk, I tried to look more objectively at the situation, and was surprised by how measured the response was. Looks like I’m sad today, I thought as I reached another tissue to mop at my face, and then at least I’m letting it out. I let myself cry until I was, for whatever arbitrary reason, finished. Later that night, I cooked a chilli, drinking red wine as I stirred. I enjoyed quiet music and the warm glow of lamplight, as winter darkened the sky outside. It was something like balance; I felt more peaceful than I had in months.
Feelings, it turns out, are not illnesses. We don’t have to diagnose or treat them. Instead, I’m learning to step back. To greet all my visitors as they pass through, rather than trying to wrestle them to the ground and interrogate them. I’ll let my emotions bounce around for however long it takes, changing directions as they please, reminding me I’m constantly in flux. Chronically ill or not, that’s just what it is to be alive.
Written by Claudia Downs
Claudia Downs is a writer from Sheffield, working in marketing and communications. She has previously had articles and poetry published in Oh magazine, The Rally, Route 57, and others.
Blog: https://claudia-downs.com/
