The early days of the pandemic were scary for everyone - but for many disabled people there were also rays of hope.
We saw the world become more inclusive seemingly overnight. Things we had spent years begging for - like telemedicine and remote work options - became possible. We made it easier for those who are housebound to access the services they need. We checked on our neighbours. We worked together to protect one another. We stopped vilifying and gaslighting housebound people like me - because suddenly EVERYONE was housebound.
I also had hope that we were finally going to make real progress on chronic illness. That Long Covid would be “too big to ignore.”
That we would start being proactive with our health and work towards keeping people healthy and really HELPING those who were chronically ill.
I genuinely still can’t believe that 400 million people are suffering from Long Covid. The numbers are growing every day and yet we do nothing to stop it (and very little to treat it).
No progress has been made on the comorbids either. I had POTS and MCAS before covid - and my treatments haven’t improved at all. In fact it’s harder to access the medical care I need because specialists treating these conditions are so overwhelmed by the rapid influx of new patients with Long Covid.
I have empathy for those who believed they would be the exception. Who thought that IF they were unlucky enough to be disabled by Covid - help would be there for them. Even though it’s never been there for the rest of us.
All these people are going through a very rude awakening right now - they’re being forced to confront the reality that patients like me have been dealing with for years.
No one is coming to save us. Our “sick” is permanent. No one is the exception.
Just like I have to deal with the pain of having the hope of a more inclusive and caring society ripped away - these newly disabled people have to deal with the pain of realizing they are in fact disabled. That they were lied to when they were told they didn’t have to worry. That they aren’t getting better.
It’s a hard adjustment - one that I hope The Disabled Ginger can help with.
In the meantime the best thing we can do for our own health and the health of those around us is prevent the spread of Covid. Wear a mask. Clean the air. Test and isolate when sick. Get vaccinated. Don’t take your health for granted.
Even if YOU don’t think you’re high risk - it’s an airborne virus. You could pass your “mild” case to someone like me who ends up further disabled or dead.
We can do this - but we have to work together. “You do you” isn’t working. We have to remember what it felt like during those first few months of 2020 when we tried to work as a collective whole. Where we protected the vulnerable, took the virus seriously and made society more accessible and inclusive.
We can do it again. We just have to decide to try.
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