Broadwaybabyto on Nostr: Being disabled & chronically ill is beyond lonely. Far too many people in society ...

Being disabled & chronically ill is beyond lonely. Far too many people in society can’t comprehend illnesses which are permanent & unrelenting but don’t necessarily kill you. As a result they EXPECT you to get better.

When you don’t - they abandon you.

People understand illnesses like cancer - you get sick & get better or you die. They can support & empathize with that.

When it comes to chronic illness … that support & empathy dries up. The idea that someone could be sick FOREVER & not die is too much for people.

I understand it’s not something anyone wants to think about. The idea of being sick forever with no end in sight is understandably scary. But just because something is scary doesn’t mean it’s not real. It doesn’t mean it’s fake or an exaggeration.

The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it.

It often starts with comments like “I’m sure it can’t be THAT bad” or “you just need to try harder”.

Gaslighting remarks that are disguised as kindess when in reality they tell us you don’t believe us. Then people start asking “are you better YET?”

That one really hurts because the emphasis is always on the “yet”. It’s as though our still being sick is an inconvenience to THEM. No thought is ever given to how awful it makes us feel to have to explain for the millionth time that we aren’t ever getting better.

These exchanges go on for awhile until they succeed in either pushing us away - or they inevitably ghost us. But the result is always the same. Friends and family lost from our lives & us facing our illness alone.

This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up.

Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid.

All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection.

I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it.

I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do.

Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.

We need allies we can count on to be there to support us. Who believe us.

My ask of all people tonight is to take a moment and think of the sickest you ever were - whether that be a flu or Covid, food poisoning or surgery recovery - and imagine feeling that way for the rest of your life. Imagine knowing there was no end in sight.

Once you imagine that - consider how hard that reality might be in a world that’s screaming at you to “just stay home” or blaming you incessantly for covid mitigations. In a world that doesn’t even think you deserve safe access to healthcare. In a world embracing euthanasia.

Now reach out to a disabled or chronically ill person in your life. Tell them they’re cared for. Ask if they need any support. If you don’t know any disabled people …
Find an account on here & follow and amplify them. I promise we need that support now more than ever.

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