Non-disabled people don’t seem to care about long COVID - but they should

It never fails to shock me how seemingly little the non-disabled community cares about catching COVID-19.

Already, this virus is responsible for killing almost 6 million people - and it’s causing a global, mass-disabling event through the emergence of long COVID. Studies are showing that anywhere between 10 – 30 per cent of people who catch COVID will develop long COVID. As someone who already lives with a chronic illness, I find this terrifying - and yet, non-disabled people don’t seem to care.

They continue to live their lives, often spouting that COVID-19 is “just a cold” - not realising that it can have drastic and lasting health impacts, even for people with no pre-existing conditions.

According to the Department of Health, symptoms of long COVID vary, but it usually includes things like extreme fatigue, joint and muscle pain, headaches, chest pain, sleep issues, brain fog, fever, coughs, dizziness, difficulty breathing and loss of smell and taste, as well as worsening of symptoms after physical and mental activities.

Now, I thankfully don’t have long COVID. But I do have fibromyalgia and a few other conditions that are being investigated - so I experience a lot of the above symptoms, every single day. And I can tell you without a doubt that it is something you do not want.

Reading a list of symptoms is very different to experiencing them. My muscle pain hurts so much, it feels like I’ve been run over by a truck and repeatedly kicked by a very large animal. Sometimes, I can barely move due to the pain, often needing mobility aids to navigate around my house.

My soul-crushing fatigue and brain fog - which is much more than being “just a little bit tired” - also make it so incredibly hard to even think, let alone trying to do all the things that make you a functioning adult.

I am always tired, but I can never sleep - and when I do, it’s never replenishing. I feel like a phone battery that can never get more than 10 per cent charge.

Living with chronic illness and chronic pain has completely changed my world. There is a lot that I just can’t do now. I have to be so careful with my energy, and pace myself with any tasks. For example, if I want to write, that is literally all I can do. If I write, I can’t cook, or clean, or pop down to the shops for some groceries. It uses all of my energy, which is so incredibly frustrating when you’re trying to build a life and career.

What’s worse is that on top of experiencing these life-altering, lasting (possibly permanent) symptoms is that the medical system can’t help you. It was overrun even before the pandemic - and now, it’s chaotic.

Getting an appointment takes months, if not years - and even when you get it, they tell you there’s no cure, and there’s nothing they can do to help.

People with invisible illnesses are routinely ignored. We have to constantly battle for our needs - and to be heard and cared for. Often, you need to pay for private care, which can cost thousands every single month. Which is extra sucky, because with less energy, you have a significantly reduced capacity to work and earn an income.

This is a reality that people with chronic illness, chronic pain and disability know all too well - because we live it every single day.

But despite the risk of becoming chronically ill, and the fact that millions of people have already developed long COVID worldwide, I’ve not seen one single person from the non-disabled community even talk about long COVID. And when I’ve brought it up, they shrug it off, as if to say “that won’t happen to me”. As if they simply don’t care.

At least, not until it impacts them.

People who’ve never experienced disability hold the belief that their bodies will always recover. They think that because they’re healthy, disability won’t happen to them.

I certainly didn’t ever expect to develop a chronic illness that would turn my life upside down. I didn’t even know chronic illness existed. But, obviously - as I very clearly know now - it does.

Just because you are “healthy” doesn’t mean you can’t develop life-altering conditions.

So, I’d like to ask the non-disabled community to take even a few minutes to ponder what life with chronic illness might be like. To listen to the stories of people who live with chronic illness. And to take even small steps to mitigate their risk of catching the virus and developing long COVID.

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