Five things I learned from living with a chronic illness

Colour photo of a hand with black nail polish, a labradorite ring and a tattoo resting on green grass

The response to my ME and me: Living with Myalgic Encephalomyelitis post has been so overwhelmingly positive and supportive that I want to write more about living with a chronic illness. One of the recurring themes of the last thirteen years has been discovery – I’ve learned so much about myself, the world and my place in it since experiencing life from a different perspective.

It’s easy to trot out cliched advice like “Never give up!” and “Stay positive!” but life isn’t always that simple and often that advice is nothing more than  a demand for you to experience your illness or disability in the manner most palatable to society while ignoring your own needs.

Learning to truly believe the five lessons listed here was a hard-won battle for me, but with each new bit of self-acceptance came new strength and new joy. I’m not going to pretend to have all the answers, but hopefully I can offer some food for thought.

You don’t have to fit the recovery narrative.
It would be amazing if everyone who was sick or injured could follow a simple set of tried and tested instructions and get better. It would be even more amazing if this looked exactly the same for everyone and happened within a predictable time frame. This is exactly how it happens for some people, but others may be living with the effects of illness or injury for many years, or even their whole lives. Many people live with degenerative conditions, so it’s not just a case of not getting better – it’s a case of definitely getting worse. If you don’t fit neatly into the recovery narrative box, it doesn’t mean you’ve failed or that you’re weak or not trying hard enough. Not everyone gets better immediately, or at all. Your experience is still valid and you are still deserving of acceptance. That also means accepting yourself.

You aren’t a professional inspiration.
Speaking of narratives around illness and disability, everyone’s heard of the inspirational disabled person, whether it’s the amputee who climbs mountains or the gold medal winner at the Paralympics or the person who lives with a chronic illness and is able to work full-time. Apart from it being totally condescending to take an “If that person can do it, I – an able-bodied person – can do ANYTHING” attitude (yuck!), it’s also unrealistic to assume that everyone with a disability or chronic illness is affected in the same way or lives with the same opportunities and limitations. Obviously I’m not in any way trying to minimise the achievements of people who manage those big, visible, awesome things, but it’s important to remember that if you can’t climb mountains or win medals or work full-time (or at all), that’s OK too. You do what you can do. Your value is not contingent on how ‘inspirational’ you are to people who will only ever see you as a one-dimensional representation of a concept they don’t even understand.

You don’t owe anyone ‘fine’.
I tend to focus on what I can do, the things that make me happy, and all the amazing blessings in my life. If the options are “Oh my god, this is terrible, the world is terrible and everything is going to be terrible forever” and “This is tough, but I can get through it”, I’ll go for the second option every time. It’s how I cope and it helps me make it through the hard times. The problems begin when I apply this to how I communicate with other people, specifically when I try to cover up when I’m struggling or pretend to be coping better than I am. It’s OK – in fact, it’s healthy – to learn how to say “I’m having a rough time and I need support” or “I can’t manage that today, but thanks for inviting me”. You are under no obligation to explain your life in detail or to justify yourself to anyone, but you’re also under no obligation to pretend to be doing better than you are at any given time.

Sometimes the easy way is the best way.
I adore cooking. One of my favourite things in the world is creating delicious, healthy recipes, making tasty soup or chilli to freeze for a week’s worth of lunches, and experimenting with ingredients I’ve never tried before. I even enjoy food shopping because I get excited thinking about all the things I’m going to make with the bargains I find. A lot of the time though, I’m simply not able to trawl around the shops or stand up in the kitchen for long enough to cook, so I rely on more accessible options. On those days (or weeks), I’m not microwaving a  bowl of tinned macaroni cheese as an alternative to cooking an amazing home-made pasta bake. I’m eating it as an alternative to eating nothing. I’ve started referring to food as accessible rather than convenient, and it has made such a different to how I think about it, as well as to how other people understand my situation.

You are allowed to have fun.
I’d hazard a guess that almost everyone living with a disability or chronic illness has experienced sharing a photo of a day out with their family, or talking about a party they went to, and had people respond negatively, assuming they mustn’t be that sick if they could visit the beach, go for a walk or have a night out with friends. When people respond that way, they don’t understand the whole situation. They don’t get how much pain you were in during the car journey, how difficult it was for you to walk to the place where you took that photo, how many days or weeks it took you to recover from that one late night, how much you have to sacrifice to have those happy days. Virtue is not earned through suffering and self-denial, and it’s not suddenly your fault you’re sick because you went to a concert that one time. Everyone needs to kick back and enjoy themselves sometimes – it’s good for the soul – and if someone judges you harshly for that, maybe it’s time to reconsider how much space they deserve in your life.

3 thoughts on “Five things I learned from living with a chronic illness

  1. So.I have no idea how to write this without passing as creepy, so I’ll just throw the words: I’ve been lurking you for quite a while. Started around 2006, way back when Vicious Little Whispers Redux showed up on my dArt feed. I was young then, and dArt opened my eyes in lots of ways. I was kinda thrilled of having people from other countries as contacts, particularly talented ones. I also follow you on Facebook, and it’s the way I’ve been able to read these posts (my dArt is a bit forgotten, and I’m too much of a scatterbrain to follow blog posts with any kind of regularity).

    You might be asking yourself then, why do I choose this moment to write? Why show up after all these years of silently watching? First, I’m a weirdo, yes. But second, and most importantly, it’s because I’ve seen you grow. Not in a sugary “become a better person” way. More in the steely “get tempered in the crucible of real life” way. And what triggered my telling this to you is your second point on this list.

    You see, I agree wholeheartedly with you. But I would like to add that the fact that you aren’t a world renowned force of inspiration, doesn’t mean you don’t actually inspire. In a way, you’ve exposed yourself to the world, you’ve made yourself visible. And that’s something worthy of admiration.

    My own day to day life isn’t great, and I’m not here to talk about my afflictions nor in any way compare them to anyone’s. Suffice it to say that seeing how you’ve played the cards you’ve been dealt has helped me a lot to see things I wouldn’t have been able to see were it not for your bravery. So, you might not win big in the Paralympics, but you remain an inspiration. A big one. At least to me.

    As a final note, know that here, half a world away, there’s someone who reads, someone who learns, and someone that might not understand, but still finds you wonderful, even if that someone won’t tell you so too often. My best wishes.

    Liked by 1 person

    1. Thanks, I think? It feels a bit weird to think that someone has been paying that much attention to things I’ve been doing for more than a decade but never said hello before now, although the kind sentiment of your words is genuinely appreciated.

      Also, you’ve only been aware of the small fraction of my life shown through my online presence since my mid-20s, so any narrative you’ve constructed about my personal growth is extremely limited. There is an entire ‘crucible of real life’ before and beyond your assumptions.

      The idea that everything was fine and then this one bad thing happened that made me a stronger person is deeply flawed and highly inaccurate, although it’s an easy and convenient story to believe.

      I guess therein lies the danger of trying to figure people out without ever talking to them. Try saying hi ☺️

      PS. I’m really ill and exhausted today so I’m not great at communicating. I hope I didn’t come off as rude, because that wasn’t my intention at all.


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