How To Talk About Coronavirus: A Chronic Perspective

I can't offer medical advice, I'm not a professional. Protocol is ever-changing and will depend on where you're based. But what I can do, is shine a light on how the virus and it's media coverage is affecting the chronically sick. Because it is, and we need to be more mindful.

If you're higher risk like me, then I hope these words bring you some comfort in a time of distress. I hope they offer a sense of community, and make you feel understood. If you agree with the sentiments shared in this post, please feel free to share. If you're healthy and this post has taught you something, please feel free to share. The narrative needs altering, and fast. Together we can help spread the message that we are not expendable, we matter, and so does your language.

Please note: I am UK based, in my mid-twenties and look perfectly healthy. I'm still higher risk.

We are not only.

In a bid to dampen panic, the overriding message is "don't worry, it will only pose a real threat to the elderly or those with underlying health issues". There are several problems with this statement, first being that while this sentiment may ease the worries of some younger healthy individuals it creates further divide between the healthy and the vulnerable and leaves people like me feeling forgotten. The implication of the word "only" is that those within these groups are less-than. That the impact on us shouldn't be of great concern to those that fall outside of these categories. Wrong.

If the message aimed at healthy individuals is to not worry, it implies that protective measures don't apply to them, and that social distancing is simply reserved for those at risk. Wrong. But more on this later.

While it is true that the virus will generally have a lesser effect on younger and healthy individuals, phrasing should be highly considered. "The virus will have a greater effect on the elderly and those with health issues, we must work together to protect the most vulnerable". Sounds much better right? It isn't ignoring fact, but instead of creating divide it is creating community. It makes us feel seen, like we matter.

We are not expendable. We are not a lesser loss. Do not throw us to the wolves.

We are not other.

Now don't get me wrong, we should all care about people we don't know. We should all work together for the common good, and not simply for our own interest. But if you feel disconnected from high-risk individuals, and it's making you complacent, think again. You know us.

We're your family, friends, neighbours, colleagues, classmates, fellow commuters. We live with you, we all live together. You might be under the impression that you don't have contact with us, but I assure you you do. Possibly indirectly, but you do.

Who are these people living in a bubble where they don't know anyone above the age of 70, or anyone with underlying health problems? I struggle to believe anyone like that exists, because we're all so connected.

It's worth noting here that a myriad of health issues are "invisible". We look perfectly healthy. We might serve you, walk past you in the street, work in the same office. We're at risk. There is no way of knowing about the health of those we come into contact with, or the health of those they come in contact with.

Maybe the person at the desk next to you looks fine, but they have a chronic illness you can't see. Maybe they are actually fine, but their partner isn't, or their Mum has cancer, or their next door neighbour is in their 80's. We're connected. I don't say that to increase anxiety in those that are at risk, but to open the eyes of those that are not. You know us, and we're relying on you to take this matter seriously. Please.

Our isolation is not the same.

I completely understand that social distancing feels new to a lot of people. I know that social isolation is a change for many, and I know that it's difficult. I'm aware that many people do not currently have the option to distance or isolate. I know for some their mental health issues will worsen. Others are living with difficult or dangerous dynamics where isolation will confine them with people that put them at risk. I know some of the most high-risk cannot isolate due to their need for care. I know many people cannot financially sustain isolation, and their employment cannot be undertaken from home.

It's such a complex issue and I'm absolutely not blaming people that don't have any other option. I'm also not saying that if you're new to isolation and are finding it difficult that you can't complain. Please simply be mindful of who you're complaining to.

We have been doing this for years. We've had to miss out on work opportunities, schooling, social events and travel for a long time. I hope this time at home gives people somewhat of an understanding of what social isolation due to illness is like, but please do not be under the impression that our experiences are the same.

Short term isolation in a bid to save others is not the same as chronic isolation over many years while being deemed lazy and over-reactive. Experiencing isolation during a global movement is not the same as doing it alone while everyone else carries on with the life you want. I'm not saying this isn't difficult, but it is different. Please remember that.

If you're low risk and have a public platform of any kind, please be mindful of how you speak about social distancing and isolation. You're allowed to complain, you're allowed to say it's shitty. Because it is. But a small caveat saying you're thinking of those that have to do this all the time would go a long way.

This is not a competition, but we all must be aware of our privileges (including myself) and alter our language accordingly.

Accessibility is not special treatment.

Those of us that are chronically sick and high risk are having a really tough time right now. Not only are we understandably scared about our health and safety, we're watching the world embrace accessibility having had it denied to us for years.

Some of us are locked out of applying for a high number of jobs because the companies won't consider anything other than office-based employment. We've been denied the opportunity to apply, or were disregarded due to our disability irrespective of our skill level. We're now watching these very same companies roll out remote working across their workforce. So it was possible after all, quelle-surprise.

Some of us have had to drop out of education because the facilities weren't accessible to us and accomodations were denied. We were penalised for our lack of attendance, and remote learning was seen as impossible to implement. We're now watching these same establishments offer remote classes to the masses, using technology that was always there. Was it just to much effort to implement it for us? Did you think we weren't worth it?

Some of us have been verbally abused online and in public spaces for needing a plastic straw or highlighting issues with the ban. We were laughed at, disregarded, and excluded from the conversation. We're now watching these same organisations deny the use of reusable cups, stating that single use is safer due to current health concerns. Some people's health concerns are ever-present, and we should have been accommodated to. Please rethink the ban. Please listen to us. We've been ignored before, please help us moving forward. Single use is sometimes necessary, and that is not the fault of the individual.

I'm not going to say good will come from this, because I feel like it minimises the current danger and risk. This is not a good thing. But please learn from it. Please take note of the fact that accessibility should be thought of in higher regard moving forward, beyond this virus. Disabled people have been saying this for years, it's time we all listened.

Social distancing is not for you. It's for us.

As previously mentioned, there are many people that genuinely cannot distance or isolate for many different reasons. This section is absolutely not aimed at you, please know that. But if you're disregarding social distancing because it's inconvenient to your social plans, or seems unnecessary, you need to listen to this. Listen, take it in, do better.

Social distancing is not for the healthy, it's for the vulnerable. But that absolutely does not mean that it doesn't apply to you. It means you should be doing it for us. Respect us enough to stay at home, if you can. Respect our healthcare system and it's workers enough to do that.

Those that are high-risk are terrified right now. We're not overreacting. We need your help to slow the curve, our emergency services and its workers need your help to slow the curve. You can help us here. I know missing out on celebrations is a pain, trust me. I know you'd quite like to go to the pub or nip down to the shops, but please take a second to think about it. Think of me and those like me while you do so. Is this necessary? Do I have a choice here?

I'm absolutely not saying take up shopping delivery slots, the disabled and elderly need those now more than ever. If you need bread and you can get to the shops then go. But you don't need that new top right now. You don't need to go to the gym. I know it's confusing when these places are still open and you want to support certain businesses like the small local independants. I know there's a lot to consider here, including economics.

But health comes first, surely? We're talking about people's lives here. Millions and millions of people.

Not only are people at high risk of catching the virus and the effects being greater, but these people also heavily rely on our healthcare systems regardless. There is a knock-on effect to consider. We must slow the curve so that people can access the care they need, whether that be medication, surgeries, interventions or more.

Even if you don't have symptoms, if certain things can be avoided where you're in a crowded public place then please do so. Please do what you can. If social distancing works it will look like we overreacted. Good.

Please remove ego from this argument. It is much better to be on the safe side and appear over-reactive. Trust me, the chronically sick have been labelled this for years, but how do you know it's not the very reason we're still here? It has the potential to work, to save people.

It is brave of healthcare, social care, emergency and service workers to show up and help people. It is not brave of you to go to the pub. You're not showing the virus who's boss. You're showing the vulnerable that you're not thinking of us.

Don't stockpile, wash your hands, do your bit. We need you.