I can’t stomach the Olympics anymore. I don’t remember any games with this many sick athletes, people unable to compete or underperforming/withdrawing. These are young folks in their prime - yet many are suffering due to Covid.
Do they understand the risk they’re taking? 🧵 /1
The Games, coaches and team doctors don’t seem interested in preventing infection or long term disability - and I question if the athletes understand the danger they’re in. Do they know it’s more than “just a respiratory virus”? /2
Do they know everyone is vulnerable to long term complications - that it’s not “only the elderly/disabled” who need to worry?
Do they know that pushing through when they’re sick drastically increases their odds of Long Covid? /3
We live in a culture that rewards performance and looks down on people for being sick. We deride people for prioritizing their mental or physical health. We give out attendance awards and punish students & employees for absences and sick days. /4
Most people are never taught that it’s ok to slow down. Ok to rest. Ok to admit they’re sick.
Athletes train their whole lives for this - of course they won’t willingly sit it out. They also trust their doctors who I doubt are telling them they need to rest. /5
Then there’s the lack of masking. Every day we hear of more people testing positive for covid - and yet masks aren’t mandatory. We know Peaty felt sick during his swim and yet accepted his medal mere inches from Princess Anne’s face and did not mask. /6
Lyles competed in his event despite KNOWING he was covid positive - and didn’t disclose his status until the race was over and he had collapsed. They don’t even have plausibly deniability anymore - they know they’re sick & they’re risking the health of everyone around them. /7
These Games would look very different if they had clean air and mandatory masking. We would see far fewer sick athletes - and likely better performances. If they KNEW they could stay healthy by wearing a respirator - I suspect they would do it. But they’re being told it’s over /8
In my opinion the bare minimum you can do when you know you’re sick is mask up. Why are we normalizing infecting someone with a virus that could kill or disable them? People should be isolating - but if unwilling or unable … wear a mask! /9
When you go out in public KNOWING you’re covid positive and you take no precautions? You’re directly contributing to the deaths and disability of others. You just don’t have to face it because the person you potentially infect is likely a stranger you will never see again. /10
I don’t know why we’ve given up caring who we infect or hurt … but we need to start caring again. This is an airborne virus and incredibly transmissible - if you don't take steps to stop the spread you will eventually harm someone. /11
I often wonder if people were forced to confront the person they infected who ended up disabled… or the family of someone who ended up dead… would they take it more seriously? 5 years ago I would have said absolutely. Now? I genuinely don’t know. /12
It’s a dark thought that keeps me up at night. We’ve simply become too cavalier about condemning people to a life of total isolation and/or death and disability. We turn away from the suffering of others and we are terrible at accepting responsibility. /13
I genuinely believe we can still do better. I think there are more good and caring people out there than not - but like the Olympians who may not be getting adequate information to protect themselves … perhaps people simply don’t understand the risk. /14
I want to believe with aggressive and honest public health campaigns - with grassroots efforts from caring people who want to help their communities - we can still turn the tides. /end
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“No Olympic athletes are going to get Long Covid! It’s been 4 years and I don’t know anyone who has Long Covid!”
Yes. You do. Many people don’t disclose their disabilities for fear of ableist backlash. Others don’t connect the dots and may not realize they have Long Covid 🧵/1
The sad reality is that like many other chronic illnesses - Long Covid is poorly recognized and likely underdiagnosed. Many patients are dismissed with “anxiety” by doctors who don’t understand the nature of these conditions. /2
Others can’t afford to seek healthcare as they’ve already lost work/income due to being chronically ill. Some may not have safe access to healthcare due to lack of masking and clean air in hospitals. They KNOW they’re sick but can’t risk re-infection /3
“If you were REALLY that sick then it won’t matter if you get set back.”
I’m begging non disabled people to stop acting like we can’t possibly have a quality of life while severely ill. Like our baseline isn’t the most important thing to us.
My baseline is EVERYTHING 🧵/1
Sometimes people believe that if you’re severely ill - you must not have any quality of life and therefore you should be willing to push yourself. Willing to risk a setback.
They don’t understand the devastation setbacks cause or the realities of chronic illness. /2
I AM severe. I’m housebound & most days I’m bedbound. I need help to shower and sometimes to get to & from the bathroom. I can’t cook for myself and eating & swallowing is a challenge. To most people it would appear I have no quality of life. /3
It’s been a devastating few weeks. I’ve had injuries & setbacks plus fractured relationships, lost friends and the passing of more mask bans.
There are stories I’ve not shared out of fear …but I feel at a precipice. We must get loud. The time for holding back is over 🧵 /1
When I first began advocating for more Covid mitigations and better disability rights and awareness… I was nervous. My previous social media experience had been as a theatre journalist - so my followers knew me in that context. Seemingly healthy & high functioning /2
I didn’t know HOW to pivot to these new topics - nor did I know how it would be received. I was afraid of being judged, blocked & ridiculed by those who didn’t know I was disabled. Afraid they would walk away from me. /3
When it comes to mask bans - your political affiliation shouldn’t matter. These bans are a serious violation of bodily autonomy. We are STILL in a pandemic. Criminalizing masking WILL kill & disable people.
🧵 on Nassau County decision & why you should care /1
I’ve said it before & I will say it again - mask mandates and mask bans are VERY different things. These bans have support in large part because people are still angry at being forced to wear a mask during the early days of the COVID pandemic. /2
I will agree that mask mandates weren’t handled terribly well - but they were done with the intention of saving lives & were ALWAYS temporary. They were loosely enforced & you couldn’t be arrested for not masking. You could be asked to leave a space & arrested for refusal /3
Katie Ledscky wins Gold with POTS - and now those of us with POTS are being told we shouldn’t be “so disabled”.
I’m proud of what she’s accomplished while dealing with this dreadful condition - but concerned about how it may impact perception of our level of function 🧵 /1
POTS is a type of dysautonomia - which literally means a malfunction of the autonomic nervous system. This is the system that controls unconscious processes in the body - heart rate, blood pressure, temperature, breathing, digestion, blood flow etc. /2
If it’s something necessary to sustain life - and you don’t have to consciously think about it - it’s controlled by your autonomic nervous system.
When this system malfunctions - it can create profound disability. Some patients are left bedbound or in a wheelchair. /3
My life is turning into a tragic comedy. I cut my thumb a few days ago - no idea how. Very mild cut but thanks to my EDS it wouldn’t stop bleeding.
I bandaged it & began having a mast cell reaction to the bandage.
The reaction became severe so I had to take the bandage off 🧵
It took a huge portion of my skin with it. Caused a cut far worse than the cut I was trying to treat. It also appears to have burned my skin - it’s red and blistered.
I have NO idea how this happened. There’s no way it should have burned me in such a short time
/2
The only thing I can think is because I recently did a 7 day holter - and I’m allergic to that adhesive - my mast cells were extra sensitive to any additional adhesive and attacked the site that had the bandage. /3