Please Stop Judging My Life With Chronic Illness

A few days ago, a (now deleted) tweet from the UK Health Secretary, Sajid Javid stated: “Please — if you haven’t yet — get your jab, as we learn to live with, rather than cower from, this virus.”

Naturally, this caused a fair amount of outrage from the general public, and a vague apology was given the next day. Speaking as someone who has been “cowering” for well over a year from COVID, the language made me and many others irate.

Language is important during these tense and uncertain times, and communication when relaying messages to the entirety of the UK and beyond should be concise, factual and empathetic wherever possible. This tweet wasn’t. The message of encouragement to get our vaccine was instantly overshadowed by a simple word that implied those of us abiding by rules and protecting ourselves and those around us, were somehow weak or even over-cautious. Big scaredy-cats, hiding from a virus that has literally decimated hundreds of thousands of people all over the globe! What are we like?!

Even if that wasn’t the intent, it was how it was read by the vast majority. This choice of word, its ilk and this style of descriptor is depressingly common in discussion around not just the current pandemic we are still entrenched in, but in illness in general. Sadly one of the overriding feelings is that living with an illness equates to weakness. If you somehow cannot “overcome” something, it is a moral failing of sorts. Maybe you’re just not trying hard enough. You’re lying down to it. You’re cowering.

Unfortunately whether living through a pandemic or living with a chronic illness (or if you’re truly blessed; both!) no amount of brute strength or willpower will change the situation. We can, of course, try our best to keep a positive outlook, stay present and focus on maintaining our treatment plans and staying as healthy as we have the power to. But none of these things somehow eliminate the problem. They serve as tools we use in order to weave a lifelong issue into our day to day lives as best we can. This is something those of us with chronic conditions have known for some time, but it has become an issue brought into sharp focus for all of us within the last year as illness has been at the forefront of all of our lives with a sudden and overwhelming prominence. Some of us have adapted to this rug-pull-from-under-us with precision, diligence, empathy and care, others may have been perhaps less stringent about sticking to guidance… but none of us have cowered. We have all attempted to adapt to something out of our control — as we have no option but to when illness is thrust into our lives.

Using our response to illness as a barometer of our strength or weakness is nonsensical, and frankly insulting.

We all respond differently to pain, illness and all that comes with it, but our having been saddled with whatever our genes (or a global pandemic) decide to throw at us, does not decide what type of person we are, or will become. In the same way we have for the most part devoted the past year and a half to supporting and caring for the most vulnerable in our society, we have been forced to adjust to the incompatibility of living our “normal” lives with this additional uncertainty hanging over us. Illness as a constant in our lives is in conflict with the traditional ideas of what a conventional life should be. There is no easy route through an incurable illness, and no right or wrong way to navigate it. But a good starting point is thinking twice before risking your own or the lives or others around you in a bid to cling on to the normality you miss. Before I became seriously ill, my life was full of dancing, drinking, laughing… and a head fizzing with all the plans and goals I’d laughably put off till “later” with the naivety of someone who has no idea what’s ahead of her. But having my life upturned has been and continues to be a continuous journey of new experiences and self-discovery (for example, within the last three seconds I’ve discovered I’m apparently the type of person who writes “journey of self-discovery” without irony).

No life with illness involved is easy and certainly never linear, but it is still a life worthy of living, growing with and adapting to. We might not be able to Sonic the Hedgehog our way through all the challenges placed in front of us, but we can still face them at a pace more manageable for our circumstances. That’s not weakness, or a lack of backbone or enthusiasm, it’s realistic and based on learned experience. I’m forever impressed by those people in my life who face their illness head on each day with grace and strength, and those who abide by guidelines to keep those around them safe in these unsettled times for the wider world. I encourage you all to take a leaf from their book when you’re looking for an example of people who are the abject opposite of cowardly.

And please don’t tell anyone I said self-discovery; past me would be mortified.