Avalon applies their favourite idiom, 'every cloud has a silver lining' to what it is like living with a chronic illness.
Whilst laying in a hospital bed, hot, silent tears trickled down my cheeks from the frustration that my rare form of dysautonomia, pure autonomic failure, wasn’t showing any improvements despite new medications, I found myself actually chuckling. I was in pain, nauseated, exhausted but found myself amused because “Well, the good thing about feeling this awful is that at least I’m alive to feel it.”
Rare and chronic illnesses are indisputably difficult. I’ve been in pain for so long that I cannot remember the last time I woke up or went to sleep without pain. My dreams of graduating from university, working and travelling feel like nothing but far-away, ungraspable fantasies. The uncertainty, the fear, the frustration of my illnesses is a lifestyle I live without choice. I think it’s very important to recognise these difficult and painful emotions—or whatever it is you feel about your own illness or disability—and to allow yourself to feel them. Anyone who tells me I’m not allowed to feel that way, or to ‘ always look on the bright side of life’ or ‘well at least it’s not …’ has no place in my life.
Goodbye toxic positivity: 24/7 positivity is neither sustainable, healthy or realistic. That said, I think that some positivity at certain times is a tool that can help make rare and chronic illnesses more manageable.
My favourite idiom is: ‘Every cloud has a silver lining’. Perhaps it’s in my nature as someone
who’s been sick for a longtime or perhaps it’s a conscious attempt because of my illnesses, but it’s a saying I’ve tried to live by for the last few years. I think it graciously encapsulates the notion that grey clouds - hard experiences - undeniably exist and should be acknowledged for all their heavy pain, but that simultaneously, there can be beauty found in almost all difficult experiences. I starkly remember the first time a psychologist essentially told me to ‘see the silver lining’—I thought it was terrible advice. I was in a medical crisis and in need of a life-saving procedure that terrified me and was triggering. She told me “Yes it will be painful, yes it will be tough, no one is denying that and you should allow yourself to feel those things. But you can also try to see it in a positive light alongside that suffering: see it as a learning experience—you’ll be able to be proud of yourself that you got through a really hard situation”. If I’d been able to walk, I would’ve stomped out of her office. Instead, I rolled away, furious, indignant that she had no understanding of my suffering and questioning how could this procedure possibly have any good side to it?
Was the procedure tough? Yes. Was it traumatic, sore and scary? Yes. Did I survive it and feel proud of myself for getting through it? Also, yes. The fact that I got through it and learnt something does not take away from my suffering. Of course I would rather not have had to have that procedure. But trying to see a silver lining in its overbearingly gigantic, sombre cloud is what got me through it. I learnt to trust my body more and feel more sure of myself and how strong I am.
Indisputably difficult experiences, like illness, sometimes allow us to see the world in a different light. Because of the pain, suffering and endless months in hospitals I’ve experienced, I find myself relishing in the small pleasures of life in a different way to my healthy peers. The first sip of coffee dancing on your tongue, a new song that mesmerises you, the 20 minutes of dappled sunshine that warms your hospital bed and soul through the window in February, your favourite food (olives bring me a disproportionate but welcome amount of joy). A lot of people take those moments for granted, whereas being ill has made me appreciate the contrast between my sicker days and better days more than ever before.
I consider being able to appreciate the little joys in life more so than before a silver lining to the dark cloud of illness. The most glowing silver lining for me is that if I hadn’t been ill, I wouldn’t have met some of my best friends, chosen family and community who I can’t—and don’t want to—imagine life without.
I realise every day how wonderful my friends and chosen family are; how much love, support and warmth I’m enveloped by, no matter what’s going on medically. I can’t even begin to express how grateful I am for them. A lot of my friendships fizzled out when I got really sick—a very dark cloud that I couldn't lift at first. But the silver lining to that is the friends who stuck around mean so much more to me now—I know those people will hold my hand no matter what. I met one of my closest friends, Anisja, who has one of the same rare illnesses as me, whilst we were at a medical rehabilitation centre together. The undoubtable support, love and understanding we have for each other is unakin to any other friendship I’ve experienced. We got up to a lot of mischief together at the rehabilitation centre on the days we both had enough spoons. Wheelchair rides down to the river, picnics of Lebanese food, making cuttings of plants on midnight adventures. If it hadn’t been for our illnesses, we’d never have met because our very different worlds would never have collided.
Being trapped in the hospital and bedridden for so many months also allowed me to discover passions for things I may otherwise never have discovered. Not a day goes by where I’m not sad and frustrated that I can’t take my race bike for a spin in the dunes, swim in the sea alone, or jump on a horse. But I’ve since adapted: I learnt to ride a reclined bike, I have a wonderful water physiotherapist and equine therapy has been a lifeline for me. Alongside adaptations, I’ve uncovered new joys altogether. When I was in hospital, I started writing poetry to help me process my feelings and learnt I’m not half-bad at it. In rehabilitation, I had (to my dread, at first) do music therapy: I picked the drums and discovered I actually really enjoy hammering a beat out, too (just God forbid anyone hears it!). If it hadn’t been for my illnesses, I’d also not be propped up in my hospital bed writing this article right now…
Another silver lining of chronic illness is that it can sometimes be comedic. Likely as a coping mechanism (maybe try therapy too, spoonies?), a lot of the chronic illness community is ready to poke fun at our own illnesses. There are an abundance of relatable meme pages on social media, as well as disabled influencers who encourage us to laugh about the circumstances we can’t change which helps us to lighten up our perspectives on situations through humour. I’ve also had a wonderful mixture of funny experiences which I wouldn’t have had if I hadn’t been sick. From drawing a Gucci symbol on my catheter bag and parading it across town, to funny puns accidentally made by doctors (COC stands for Combined Oral Contraceptive, incase your gynae asks if you’ve taken it before) to having people stare at you with jaws gaping in utter shock when you stand up from your wheelchair to reach the tomato sauce on the top shelf (#AmbulatoryWheelchairUsersExist!).
It goes without saying that I’d rather not have my rare and chronic illnesses. I’d give anything to not suffer through the pain and to live the life I had previously dreamt for myself. But rare and chronic illness is now a part of who I am and is here to stay whether I like it or not.
The silver linings don’t make up for the clouds or invalidate the suffering, grief, fear, pain and trauma of illness, but I may as well embrace the silver linings instead of letting the storm drown me.
Illness is a rough ride. If the circumstances allow you too, perhaps try to see some specks of silver and have a chuckle as you buckle up for the ride.
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