Read on Twitter
This is about patients in the UK but applies to the US too: and any country that has failed to protect the medically vulnerable during this pandemic. https://twitter.com/stylistmagazine/status/1310128042212233216
While I see healthy people around me fretting about lack of social engagements or cancelled plans, I’ve spent the past 6 months worrying about survival every time I need groceries, and putting off important appointments, scans, and bloodwork related to managing my chronic illness
I have to get regular bloodwork to make sure the meds I take for my condition aren’t destroying my liver and kidneys. I’m now months overdue for that bloodwork and have to decide which risk to my health and survival I feel like taking.
My condition, EDS, involves frequent injuries and flare-ups of symptoms that generally require regular medical care. I’ve been able to do my monthly pain management appointments over the phone, but I’ve neglected professional care (exams and scans) for injuries I’ve sustained.
While people around me wonder when they’ll be able to get a haircut or go to the movies again, I sit here wondering if my latest injury is bad enough to risk going to a doctor, or if I should just hope it’s not serious & that treating it at home won’t result in permanent damage.
So whenever I see someone crying about “freedoms” or about how unfair it is that they “can’t live their lives” because they can’t get a haircut or have to wear a mask, I want to yell, “You have no idea how lucky, and how free, you really are.”
This is not to say no one is allowed to feel sad or frustrated by the immense change our lives are undergoing right now. I’m just asking people to have some perspective. The more we work together on all of this, the faster we will get through this.
Because whether most people resume normal life or not, those of us who are medically vulnerable are stuck with this situation until the virus is gone or there’s a vaccine. And the more people forget about us, the greater the danger becomes for us and the more isolated we feel.
There has been a depressing lack of discussion and coverage (outside of disabled writers/sites) about how this pandemic is affecting the day-to-day lives of the chronically ill...
beyond listing our deaths as statistics and using our underlying conditions to reassure the healthy that they’re less likely to meet our same fate. Which is baffling to me considering we’re one of the populations most severely affected by all of this.
If you are a writer or journalist doing a piece on the pandemic, please do better. Don’t just keep telling the story from the lens of what you consider the “normal” human experience in all of this. The chronically ill and disabled are part of society too and we’re being forgotten
(And perhaps “being forgotten” isn’t quite the right phrase...”*still* being forgotten” is more accurate...considering the “normal” everyone is so desperate to return to often wasn’t working well to begin with for those of us who are disabled/chronically ill anyway)
I’m sorry, I try not to be so salty on here. I like my twitter to be a happy place filled with art and cats and it has not been that lately. But it’s been a very long year. And it’s hard to keep churning out positivity and art when my reality rn is a constant state of stress.
