“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2
"if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well. "
I don't want to ever lose that empathy and compassion. High risk activities and unwillingness to mask aren't worth your health. They aren't worth potentially killing or disabling someone else.
I don't consider taking Covid precautions to be extreme - I consider it to be sensible and kind. If more people were doing it we would be in a much better place right now.
Unfortunately the world wants to go back to "normal" - even if that normal doesn't really exist.
I don't know how to get through to people like this relative. I've been trying for four years and most people are still sticking their heads in the sand. Most people are actively ignoring the threat & shunning people like me in the process.
So please - don't tell someone they need to try harder to be "normal". If you're someone who still can't understand the concept of disability and chronic illness? And you're refusing to take ANY Covid precautions? Think about whether that's a sensible approach.
If you can't understand how difficult it is to be chronically ill, if you can't comprehend a situation where you may become sick and never recover... You should be trying to avoid Covid. Because Long Covid is severe, debilitating and currently has no cure.
If you genuinely believe those of us who are chronically ill are simply not trying hard enough - you don’t truly understand what you’re risking. If you end up like us you will learn quickly that we’re telling the truth. We’re sick day in & day out with next to no support.
As always please remember everyone's life has value regardless of their health status. We all matter, we all love & contribute to this world in our own way. Care about the air we share & help us fight for a safer, more inclusive society. We will all be better off. 2/2
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