Where has empathy gone & why being chronically ill is painful & exhausting in Covid times 🧵. For everyone screaming that Covid is mild and we should stop living in fear and go back to “normal”… some of us don’t have that choice. Some of us didn’t have your version of /1
Normal even before Covid came along. I was immune compromised & mostly housebound due to cardiac issues before the pandemic. It was lonely and isolating but I did the best I could. I masked in high risk healthcare settings because even the tiniest infection could be deadly. /2
And guess what? HCWs masked around me as well. It was never a contentious issue. Getting healthcare was much simpler because hospitals weren’t anywhere near as stretched as they are now nor were they overrun with an incredibly contagious virus. Sure I had to be extra /3
Careful during cold/flu season - but Covid changed the game. There’s outbreaks year round in hospitals making them fundamentally unsafe for people like me. Even in facilities that have mask mandates - you still get the odd HCW who won’t mask or rolls /4
Their eyes & accuses you of being “anxious”. Each time that happens it stings a little more. No one ever accused me of being “anxious” for masking in the before times - nor did they think it was odd I was mostly housebound. These are the limitations imposed upon me by my /5
Disability and the overwhelming majority of people understood and were empathetic. In this mad rush to return to a “normal” (which was never as inclusive to the disabled as it should have been) people have dug in their heels and cast aside the sick and vulnerable /6
At an alarming rate. They’ve decided that anyone who needs accommodations is weak & living in fear. They’ve told us to be quiet. We get trolled on social media and mocked in real life. The people tearing down the vulnerable haven’t realized what we already know - we’re ALL /7
Vulnerable. Covid can disable anyone - even the strong and healthy. Many people have pre-existing conditions that are silent. The only difference between us and them is that we KNOW we are vulnerable and behave accordingly. We’ve also accepted that this virus doesn’t care what /8
We want to do. It will continue mutating and infecting if given the chance. We have to change and adapt if we are going to stop it and far too many people are unwilling to make even mild adjustments to their way of life. Covid is infecting at an alarming rate and no one /9
Is spared - so we are literally all in this together. Regardless of whether you’re able bodied or not, left or right leaning, we are all humans. We will either succeed or fail together. So I implore you to consider those less fortunate and listen to us when we tell you how /10
Much the pandemic has altered our lives. How it’s made day to day activities nearly impossible, made accessing healthcare more challenging and left many of us a shell of the people we once were. We are stuck in the inbetween - forgotten by society yet still very /11
Much here and aware of what’s happening around us. We warn people because we care. We don’t want more people joining our ranks. We see how we could collectively limit the devastating effects of Covid. So let’s start today. Mask up, clean the air, ventilate… protect others. /end
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I shared a story about being in hospital w/a mask mandate. HCW not masking correctly accused me of “anxiety” for asking her to mask. A week later & still getting troll posts. I fail to understand why people are so angry a patient in a hospital would try & protect themselves 🧵 /1
I decided to showcase some examples of the vitriol I’m receiving. I’m immune compromised & high risk. I’ve been screamed at to “just stay home” for the last four years. Given how sick I am - I do stay home. I’ve accepted that public places are no longer safe for me. I don’t /2
Have the luxury of staying home and avoiding necessary medical care. So I’m grateful to have a hospital that sees the value in mandating masks - and that’s where I go. I’m simply looking for protection in the ONE place I have no choice but to go. You would think sharing this /3
One of the worst parts of living with complex chronic illness is the unpredictability of it. You can do everything “right” and still get completely laid out by your body. You can build in rest times/days, avoid triggers & do all the other hacks for health & still end up in /1 🧵
Hospital. ERs are not designed for rare chronic illness patients - and even the most kind & compassionate doctors will struggle to manage these conditions. Especially in pandemic times help is often not available anywhere else. So you fight to keep yourself healthy & out of /2
ER and pray you won’t end up like a hot potato when you do need help. Everyone mocking those still taking Covid precautions - please listen: Healthcare isn’t going to be different for you. You don’t want complex chronic non-curable illness. Whatever restrictions we take to /3
A mask 🧵 for the Covid conscious. At a hospital clinic (in a facility that still requires masking) and nurse only wearing baggy blue under her nose. I asked politely and repeatedly for her to pull it up and explained I was immune compromised. Her reply? /1
“You seem really anxious about Covid”. I explain I’m not anxious but high risk & would appreciate her wearing mask correctly. She sighs & pulls it up. At end of appt I mention how quiet it seems & she says yes half the staff out sick so I’m “lucky” my appt wasn’t cancelled 🤦♀️ /2
This is what we are subjecting our clinically vulnerable people to. This was a needed appt that I couldn’t skip. So I have to risk exposure to Covid & defend myself against accusations of anxiety only to be validated in the end when they confirm half the staff are out sick. /3
On #MAiD in Canada and why disabled & chronically ill people are afraid of expanding legislation. 🧵 will include a few relevant news articles.
MAiD is a valuable program that I think many Canadians were proud of when it was first implemented. /1
Terminally ill patients and those suffering without any hope of improvement deserve the option to die with dignity. The problem is that we’ve now expanded the program to allow people with socioeconomic issues and treatable conditions to access medically assisted death /2
We are offering MAiD instead of better medical treatments and/or social support, affordable housing, living wage etc. Given we are still in a global pandemic where there’s been ongoing concerns of triage in critical care - seeing people access MAiD who wanted to live but /3
What I wish the “I trust my immune system/Covid is mild” crowd would understand about chronic illness & disability. Those of us who are sick desperately WANT to get better. The problem is most chronic illnesses don’t have any easy fixes or cures. Access to healthcare depends 🧵/1
On many factors like socioeconomic status, geography, insurance status, minority status and gender. There’s landmines everywhere. The more rare your condition the fewer doctors who understand it and therefore - longer wait times. While you wait for the expert doctor you may /2
See a host of other doctors who don’t understand or misdiagnose you and end up inadvertently making you worse. Perhaps you get a diagnosis only to find out there’s no real treatment and only one doctor in your country who even takes on new patients. Progress is painful and /3
On universal masking & hope. I was immune compromised before Covid & would mask in hospitals and higher risk situations. Most HCW’s would intuitively mask when they saw mine - but I never thought to ask outside health care settings. Normalizing masks during the pandemic 🧵/1
Gave me hope. It made me think we might be progressing to a more inclusive society where the disabled and clinically vulnerable could participate in the world more safely. We’ve adapted to many other circumstances and this felt like /2
One more adaptation. Just like the accommodations to virtual activities and work from home options gave many disabled people hope - masks did as well. When people dropped masking the moment they were told they could - my hopes were dashed. Since then I’ve watched us go /3