A right leaning friend told me that given all the lies told at beginning of Covid pandemic he didn’t feel anyone would reconsider mitigations unless “bodies start piling up”. I explained that it’s not death toll in acute phase that is the biggest concern - it’s disability. 🧵 /1
This person genuinely didn’t understand that a virus could be a significant threat to the population in the absence of “bodies piling up”. I tried to educate on sudden deaths after recovering from Covid - that was met with “no way to prove it was Covid.” /2
I tried to discuss rising disability rates and the odds of Long Covid and that was met with “I don’t know anyone with that - clearly it’s not an issue.”
Herein lies the problem. For many people unless someone they know is directly impacted they can’t see there’s a threat /3
I explained that many people don’t realize they have Long Covid and/or are hiding their symptoms. They don’t connect the dots. If your social circle is relatively small that may mean it’ll take longer before you know someone impacted. /4
It was met with “I’ve heard Long Covid is only a risk for people who are already sick and vulnerable. So I’m not worried.” I explained that the vulnerable deserve protection too - but that made no difference. /5
Government & media have done an excellent job convincing people not to care about the vulnerable. That we are nuisances to be discarded because we are getting in the way of people “getting back to normal.” /6
Between people’s lack of compassion for those who are disabled and the insidious false belief that only the “already vulnerable” are at risk of Long Covid - how do we get people to care? /7
I even tried explaining that many people quietly exit society when they become disabled. It’s not like it makes the news or there’s a running tally of all the people maimed by Covid. They just disappear. And people are only to happy to LET them disappear. /8
Needless to say the conversation went for about an hour and got absolutely nowhere. It was made abundantly clear to me that unless there was obvious carnage - people would continue to believe Covid was no longer a threat. /9
Once again I was left with more questions than answers … because there really is no easy way to showcase the long term effects of Covid (especially only 4 years in). People like this friend won’t read studies & won’t pay attention unless it happens to them. /10
The one glimmer of hope was that they said IF it became apparent that it was causing significant disability - especially in healthy people - they would want to know. Of course this made me want to scream since I consider it to already BE apparent. /11
But perhaps this shows there IS an opportunity. Some people will be swayed if they believe there’s a direct threat to themselves. Convincing them to protect others remains a bigger challenge - but if we get them to care about themselves others are protected by default. /12
So keep telling your stories. Keep calling politicians, proudly wearing respirators & putting up billboards. Keep speaking out. Don’t allow yourself to be quietly disappeared. The more of us telling stories the louder our collective voice becomes. /end
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Given the DoorDash discourse started because of someone with MCAS requiring specific food - let’s talk about MCAS. It’s a BEAST of a syndrome that can drastically alter quality of life - it is NOT just a histamine issue. It’s one of the hardest things I have to manage 🧵/1
MCAS stands for Mast Cell Activation Syndrome. Your mast cells are an immune cell present all over the body & in the bone marrow. They contain histamine - but they also contain heparin, cytokines, prostaglandin & more. When they misbehave it wreaks havoc on the body. /2
I have MCAS and my case has proven particularly difficult to manage. It has upended my entire life. I wish it were “just” histamine but these pesky cells do so much more. In MCAS you have a normal amount of mast cells - but they’re overactive. /3
“If you’re too sick to microwave a meal you need full time care! You don’t have full time care? You must be faking!” The comments I’ve seen about disabled people needing to use food delivery apps are hurtful & judgemental. A 🧵on disability, ableism & lack of support /1
There is a pervasive argument that many disabled people MUST have full time care or they’re “not that sick”. Temp abled people refuse to accept that many of us don’t have a full time option & need piecemeal help wherever we can find it. Many of us can’t cook, clean or drive. /2
Yet when we outsource that help we get criticized. The most common criticism I hear is “if you really couldn’t do those things you would have a caregiver.” This is a ridiculous argument. Do people think caregivers grow on trees? /3
I’ve got a friend who’s not taking any Covid precautions because he’s angry about restrictions placed on people at the beginning of the pandemic. He wants to forget it ever happened. I mentioned Covid can infect dogs. He loves his dog. He paused & said “well what can I do?” 🧵/1
I felt a moment of hope because it seemed like the risk to his dog MIGHT be the thing that got through to him. I shared a few articles about Covid in dogs and he was horrified and genuinely worried for his pup. He wanted to know how to protect her. /2
We discussed HEPA filters & ventilation, testing & masking around your pet if you have Covid. I explained how a layered approach is the most effective. His reply? “That really sucks. I don’t want anything to happen to my dog. But that’s way too much work.” /3
If you’re newly disabled - whether by Long Covid or any other chronic illness - you need to prepare yourself for gaslighting. Doctors, HCWs, friends, family…. You will be surprised how much it’ll happen. A 🧵on how to cope, why it happens & finding your tribe. /1
I will be honest - before becoming disabled I barely knew what gaslighting was. It had happened to me but it wasn’t something I was acutely aware of. That changed in a hurry when I lost my health. /2
People who are temporarily abled always seem to think they won’t become sick - or if they do they will be surrounded by love & support and easy answers and “fixes”. Unfortunately that’s rarely the case & this realization can be quite jarring for people. /3
When you’re chronically ill - and especially if your autonomic nervous system is broken - the smallest setbacks can devastate you. I don’t think healthy people understand this. Our baseline means everything - and it’s far too easy to destroy it. A short 🧵 on recent struggles /1
I’ve got many conditions and chronic illnesses but one of my worst ones is Dysautonomia. It’s treatment resistant and has gotten worse over time. My autonomic nervous system DOES NOT WORK. /2
That means my body can’t properly regular its blood pressure, heart rate, temperature, digestion, respirations and so much more. It can’t understand the difference between good & bad stress. My heart rate and BP will go crazy at the slightest setback or trigger. /3
Let’s talk about THAT NPR article. I’ve taken a few days to grieve for those forced into dangerous situations by spouses/family who would rather go back to normal than protect their vulnerable loved ones. Where has kindness gone & how do we stop treating ppl as disposable? 🧵/1
I wish I could say I was shocked to read that piece - but after 4 years of being abandoned by more people than I care to admit - little surprises me anymore. We were “all in this together” for a few weeks - and then people got sick of it. /2
People don’t want to change their behaviours. For many healthy & privileged people the pandemic was the first time they ever had to make sacrifices or change their “normal”. Most didn’t like it. /3