Tag Archives: Long Covid

Covid Safety is a Social Justice Issue

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I keep looking for a simple and concise article I can hand to someone who just doesn’t understand how social justice and SARS-CoV-2 (Covid) are related. I can’t find one I really like, so I’m writing one.

Here’s a true story. I belong to a Social Justice book club. All of the books we read are about social justice. I am the only member who masks. It’s frustrating. These are good people who really care about others. We study. We read together. We try our best to translate our reading into action that will lead to greater social justice. But I am the only one who masks. The space we share has a window that opens. I enter in my mask, open the window and hope for the best while we discuss our latest book. (This month’s book is “One Day, Everyone Will Have Always Been Against This” by Omar El Akkad.)

My book club knows that I am a person who is chronically ill. I identify as disabled. I have the dreaded “pre-existing conditions.” Because Covid is airborne, most public events are difficult for me. I have to mask indoors, and often outdoors too if I’m in a crowd. As a result, a lot of activities are less accessible to me. I have to weigh the risk in a way others don’t. In part, I have to do this because no one else masks. Theye are busy breathing their germs into the air we share.

Despite reports to the contrary, the pandemic is not over. There is no need to use the past tense about it. People still get Covid, but since hardly anyone tests, it’s hard to know how often. I think we all know this; we just don’t want to know it. Wastewater gives us some indications of the prevalence of Covid. I know at least twice a year, others are talking about this terrible “thing” that’s going around that they just can’t shake. Most people I know have had covid three times now. Some have had it six times.

Covid is more than a cold:

Covid is often referred to as a neuro-vascular disease that presents as a respiratory infection. Once the cold and flu symptoms go away, it can keep working on you, leaving damage in every organ, particularly your brain and heart. Covid has been linked to an increased risk of cancer and to cancer recurrence. It has been linked to the reactivation of other viruses like EBV and Shingles. The list goes on and on. Covid causes immune system damage, and the more often you get it, the worse your immune system becomes. You become susceptible to other viruses and when you get them, they often are more severe. And the more often you get Covid, the more likely you are to get Long Covid, that is, a strange cluster of symptoms that can leave a person bedbound and medicine is still struggling to understand. It is estimated that worldwide, 400 million people have experienced Long Covid, about 6-7% of adults. There are still a lot of variables and plenty of people think the incidence of Long Covid is undercounted. This is why Covid has been called a mass-disabling event. At this point, literally thousands of peer reviewed studies show the harms of covid.

It seems like something we should care about.

Prevention:

I understand what it is like to be sick. I’d rather not get sick again, or add to my existing issues. And until we have a sterilizing vaccine, there is nothing that is a 100% sure thing to prevent Covid. Some people suggest that is about 5 years away, but with the gutting of science and research in the US, I’m skeptical. (But officially, I remain hopeful.) Today’s vaccines will help keep you out of the hospital and probably keep you from dying, something that happened to many of Covid’s early victims. Hand-washing is always a good idea, but because Covid is airborne, hand-washing won’t protect you from Covid. The most effective thing to do is to mask with an N95 respirator or better, not a baggy blue medical mask that lets air in. It would also be a grand idea to clean indoor air. How? HEPA grade air filters. There are many. Public buildings could have their HVAC upgraded. There’s also some interesting work being done with Far UV, but this remains a more controversial solution. Even if we could just filter indoor air in schools, hospitals, and health care settings, we would go a long way to making the world a lot less risky.

Why is Covid a Social Justice Issue:

First of all, health is a social issue. That’s why we talk about the social determinants of health. For example, a good indicator of life expectancy is how much money you have. We often discuss health like it’s only a personal responsibility. What did they eat, not what can they afford to eat. You get the picture.

Nevertheless, we live in a “personal responsibility” culture even though we are affected by everything everyone else does and the environment itself. If the environment is polluted, it’s awfully hard to stay well. Outdoor air quality is not something an individual can control. Just think about how smokey the air gets during fire season.

Accessibility is also a social responsibility. We can’t do it alone. For example, we, as a society, build wheelchair ramps because a wheelchair user can’t get very far in a world of stairs and curbs and we can hardly expect individuals who need access to fix the roads and sidewalks or build ramps and elevators in public places. Some things are better accomplished together. There are plenty of places that don’t bother to create accessible streets and buildings, but thankfully, we still do that. Sticking with the wheelchair example, the cost of wheelchairs is wild. And do you know what a person has to go through to get a wheelchair fixed? But I digress. My point is that the cost of chronic illness and disability is largely borne by the ill person, even in a place like Canada which has universal health care. Illness is incredibly expensive.

A person interested in social justice would be concerned about a disabling disease running rampant that will increase inequality throughout society.

People can’t work when they’re ill. Jobs like nursing, teaching, other healthcare work, and many other service jobs are women dominated. These jobs also have many racialized workers. Labour conditions aren’t great, so there are few, if any, paid sick days or short or long term sick leave. We don’t yet live in a world with Universal Basic Income, so who can afford to get sick? Certainly not your average minimum wage worker.

So, to recap, illness is expensive. Sick people are expensive. And we’re living in a time with eugenic and fascist leanings. That means it appears we sick people are a burden and a lot of people aren’t afraid to say so. How many times did you hear the death of a person with Covid justified by the “pre-existing condition” narrative. “But they had diabetes, high blood pressure, they were overweight, had diverticulitis” or any other “itis.” Or old age. Sick people and old people are expensive. And babies. Babies are expensive. Capitalism only really likes people who are “productive.” Babies are unproductive. Capitalism values their future productivity, but wants to get to it with as little cost as possible. If you are unproductive within caitalism, some people think you’re just a drain on society. It seems pretty clear that if you want to fight fascism, you have to fight for the people affected by it most; sick people, old people, babies, and other marginalized folks.

There’s more. Insurance hates paying for sick people. They like collecting premiums, but aren’t as excited about the paying out part of their job. It digs into profits. With a disease as new as Long Covid, getting “proof” that one is ill remains quite difficult. Is Long Covid real? Why yes, it is. But not everyone agrees. Especially those with a financial incentive to continue to question the emerging science. And sick people don’t have the energy to get the appointments, the notes, the this and the that to prove what has happened to them is real, let alone prove their disease is real.

Further, too many people, including those within most of our governments, are pretending Covid isn’t a thing anymore. Why? Because it’s expensive! Remember CERB? That might be the closest we ever get to UBI. It was glorious. People who got sick could stay home. People didn’t have to fear losing their homes because of the pandemic. And then it ended. Why? Because it was expensive! We were told to “go back to normal.” Public health abandoned its responsibilities. It abandoned us. And this is not some faceless agency. These are people. People working in public health, with a responsibility to tell the truth about the risks we face to our health and what we can do about them. They abandoned us. They abandoned their responsibilities. Worse than that, they obfuscated to the point of lying. Covid is not harmless. Everything is not OK. Indeed, while there is a case to be made that the emergency is over, (especially with the vaccines largely minimizing the worst outcomes) but Covid was never over.

Meanwhile, has anybody counted up the cost of lost work days, lost homes, lost families, lost lives and livelihoods? Someone has done the math. Covid may be responsible for the loss of 1% of global GDP.

It’s important not to fall in with the minimizers. It’s important not to fall in with the fascists. It’s important not to fall in with the eugenicists. They have an agenda, and it’s not a social justice agenda. It’s a corporate and capitalist agenda in which we are only valued as cogs in the machinery of creating profit for billionaires.

Government has a responsibility to care for us, and, I would add, it has the money to do so. After watching literally billions of dollars go to a useless war and the build up of weapons for more war, I will never again accept the excuse that, when it comes to caring for people, it costs too much. There is money. There is simply no political will.

Caring for people is a social justice issue. Let’s care for people enough to help them prevent Covid. Let’s care for the many people who already have Long Covid. Let’s understand the intersections between Covid, other disabilities, gender, race, and class. If you care about marginalized people, about everyone, caring about Covid is part of that. You have to do what you can to minimize the spread of the disease. Do it for yourself. Do it for others.

If you’re out there thinking you’re a social justice warrior and you’re not doing all you can to prevent Covid and make this world a safer place for everyone, maybe you could do better. At least think about it.

Hospital Acquired Infections and other disasters of the modern age.

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I am home from the hospital for the six or seventh time in the last two months or so. I’ve been in the hospital so much, I’ve actually lost count of my stays and, strangely enough, sick people aren’t that good at record keeping, especially when they are sick enough to be in the hospital. With help from loved ones, I could rebuild the chain of events, but I don’t want to. I’d be just as happy to forget it. Anyway, this morning I tested negative on an admittedly unreliable rapid antigen covid test* on day 3 at home and I will test every other day until day 10 to do my best to make sure I did not pass along a Hospital Acquired Infection (HAI).

My hospital admissions include more than 30 overnight stays and two stays that were a week or more. I think I’m in a pretty good position to talk about the state of masking in our hospitals and where we’re at with Covid in BC hospitals.

But first, I want to note that I have talked to, I’m guessing, over 100 medical professionals during this time. That is a low-ball estimate for sure.** Only one asked me about covid. One. He was an ER doc who saw on my record that I had picked up a paxlovid prescription the day before. (I keep one on hand just in case. My last one had expired and I am  medically complex. For me, it’s like having an EpiPen. Hopefully, I won’t need it.) I explained this to him. No other doctor who took my history, NOT ONE, asked if I had ever had Covid. This seems like a big failing to me. The number of illnesses and diseases they screen for is staggering. But they haven’t asked about the most likely culprit causing people to be ill since 2020. They seem not to know that many people develop Long Covid after their initial infection appears to be over. They don’t seem to know that Covid is a vascular disease that can affect every organ in the body, including the brain, and even our immune systems. They don’t seem to know that Covid can and will complicate anything else we have going on. Why don’t they know this?

Only one of my doctors (I have at least 6 regulars and have seen probably 15 others between emergency visits and other procedures**) masks regularly, but I have seen even him walking around the hospital without a mask. At least he masks when he comes to see me. Some of the covid cautious community have written about why doctors might not mask. Have a look at Jessica Wildfire (OK Doomer) or Tern’s account on X/Twitter. I’m too tired to link to the exact threads. I have also written about it a little here and there. I think I’ve said all I want to say on the matter in an open letter to health care workers and in the second half of my post about Doppleganger. Have a look. I’ll admit, I’m a little obsessed with the issue of masking in health care because my life depends on it. My whole world has been health care for months now. But back to doctors, in short, we all contain multitudes—we are both careless and caring. Doctors too.

I’m not going to vilify the people who have kept me alive. But I will say it is time for some medical professionals to take stock. Many of their colleagues are showing leadership which they should emulate. For example those at the Yale School of Medicine have done tremendous work on understanding Long Covid and doing the job that public health should be doing. Look it up, and their ground breaking study with Dr. David Putrino at Mount Sinai.  And while you’re at it, read some of Eric Topol’s excellent public education work. These will lead you to more resources.

Anyway, the first couple of times I was in hospital, there was a mask mandate in health care settings. It meant I was safer. It was not perfectly enacted. The entry lobby is not well managed. There are still administrators without masks and behind plastic screens. Pure hygiene theatre. But I won’t criticize them for having multiple hand washing stations visible everywhere. It’s a hospital. This is good practice. I would suggest they should add masking signs to all of those.

In all of my hospital visits, I wore a mask (3M aura is my mask of choice) in all public areas, in hallways when porters were ferrying me to multiple tests, in procedures rooms and so on. Porters always wore masks. Good management there. I appreciated it so much. I did not mask in operating rooms, obviously. One would hope those would be reasonably free of harmful viruses or bacteria, and anyway, you can’t mask while intubated. I was unmasked in recovery rooms because I was mostly unconscious and unable to do so. I also did not mask in my own patient room. I was fortunate enough to be in a hospital in which most patients have their own room, at least on the cardiac and complex surgery wards. And, the window in my room opened. I knew I was taking a chance, but how could I possibly mask for a week straight? It’s not reasonable. That’s why everyone else has to mask, so patients can get a break, sleep, breathe easier, and heal.

My last two times in the hospital were after the mask mandate was removed. The first time, I put a sign on my door asking anyone who entered to mask and a nurse was kind enough to leave a box of masks by the sign. Everyone except one person complied, and no one complained. The second time, we were a week further away from the lapse of the mandate. Another sign went up at my door. This time, I got push back. One nurse came in and demanded (the tone was demanding) to know why I wanted people to mask. I looked at her as politely as I could, and  said, “Covid.” One word. She looked disgruntled and said, “But you’re not masking.” Again, I was in my own room. I said, “I just had open-heart surgery and a lobe of my lung removed. I mask outside this room.”  She warned me she could not make anyone else wear a mask. She actually said this with a little glee. But when she came back, she was wearing one, and about 80 per cent of people who came into my room did too. I was not as safe as the time before. But again, I kept my door closed and my window open.

Maybe you’re going to come on here and tell me how to do this. Maybe you’ll tell me my measures are idiotic. Please. I’m tired. I’ve done my best. Knock on wood, I’ve avoided a hospital acquired infection 7 times. That includes MRSA and other plagues of the modern world. (Excuse me while I literally knock on wood.) As for you, you do you. You probably won’t be in your own room in a newer hospital with decent HVAC. If that were me, I would bring in every kind of filter imaginable and mask much more. But ultimately, you have to eat and drink. Masks might slip while sleeping. You can only do so much. That’s why it takes all of us. It can’t be an individual effort.

On my last visit, I noticed in the hallways, procedure rooms and other public spaces that hardly anyone masks anymore. Maybe ten percent of people. I would often get wheeled by Cardiac Short Stay and see twenty or more people sitting in a row of chairs in the hall, all unmasked. They are there for pacemakers and all the procedures that can be done on a heart outside of an operating room. They are still serious procedures and if you’re there, you’ve got a health issue to care about. One way to care about it is to wear a mask. Do it for yourself, if not for me. Maybe I will finally put this issue to rest on my blog. If not, I hope it is because I have an update about how indoor air quality and masks are suddenly being seriously improved in public spaces. A girl can dream.

Meanwhile, Do No Harm BC continues its efforts to bring back mask mandates. Check them out here. Maybe add your voice to the project.

*Re bad RAT tests. It’s impossible for me to find a RAT test in my area of BC that is not expired and rumour has it the government is quietly ending free access to them. I also understand they are increasingly unreliable with the new variants. Why are we not investing in improving this important tool in the arsenal of preventing the spread of covid? Remember, many cases are asymptomatic: the only way you might find out you have it (and therefore take appropriate measures not to spread it) is to regularly test.

** Re my many procedures and doctors. To be clear, my gratitude to the public health system in Canada knows no bounds. Those trying to privatize it are the enemy of the public good, ableist, eugenicist, or worse.

An open letter to my health care providers: you are irreplaceable.

2 Replies
As you know, I’m in a health crisis. You are one of many professionals who are applying their skills, expertise, experience, and knowledge to helping me get through this. I appreciate you more than words can convey. Your care is the difference between life and death for me.
And I’m worried about you.
Many of you are not taking the pandemic seriously. You act like it is over and talk about it in the past tense. Covid, that is SARS-CoV-2, is a Level 3 biohazard, like tuberculosis. It is spread through the air like smoke. Once you get it, it often presents as a cold or flu, but it is so much more. It is a vascular disease. It potentially affects every part of your body, every organ (including your brain), your blood, and your immune system. It has long-lasting effects that we are only beginning to understand. There are a plethora of peer reviewed studies examining the harm that Covid can cause. For years now, some have suggested Long Covid could be a mass disabling event. It already is. Over three million Canadians have already experienced symptoms of Long Covid. Many people with Long Covid cannot work. The first major study of doctors with Long Covid in Britain reveals it has impacted the respondents’ ability to work and to carry out regular day-to-day activities. Almost one in five said they were no longer able to work because of their post-covid ill-health.
You are around sick people all the time. I urge you to wear a good mask, that is, a respirator. Yes, it would help me, but again, I am also worried about you. You are so important. So few people can do what you do. It takes years of training and practice and hard work. You studied for years to be able to do this. Your knowledge is so needed right now. And you are irreplaceable. Irreplaceable.
I have conversations with those of you who are obviously dedicated to protecting yourselves from Covid. You wear respirators and some of you wear face shields too. I appreciate the care you are taking. Some of you only work nights now or take only occasional shifts. Some of you have left full time employment. This is a huge loss for those of us who need you, but I understand. And I support you. It is safer. As one of you said, you have to protect yourself and your family.
Some of you wear the masks that your employer provides. They are better than nothing, and I appreciate the effort. But often they are not N95. They are not respirators. Maybe your employer, the health region, the hospital, the doctor’s practice, could provide better respirators.
Even though in my region, there is currently a mask mandate in all patient areas in hospitals, everyone behaves differently. Some of you introduce yourself and take a breath, peel off your mask for a second so I can see your face, and put your mask back on. I understand why you are doing that, but you don’t have to. I can see what’s going on in your eyes.
Some of you, particularly those at intake desks, still think being behind a clear plastic barrier is enough. It is not. Air travels over, under, and around these barriers and Covid travels in the air.
Some of you pull down your mask when we get into an important conversation, a life and death conversation, or when you are trying to make sure I understand you. Don’t worry: I can understand you through your mask.
Some of you wear masks in the hospital but not in your offices.
Some of you don’t wear them at all.
Masking is a vital part of infection control. It is a vital part of protecting yourself.
You are irreplaceable to me, as your patient, and to your other patients. There is no one else who knows what you know the way that you know it. No one else has your exact experience.
You are even more irreplaceable to your families and your loved ones. Irreplaceable.
I’m going to say something wild here: I love you. All of you. Even the bossy nurse whose poor mask wearing set the tone for the rest of the medical staff in that unit and left everyone less safe. Even you. You obviously have skills. You were the one who got everyone’s questions. You were the one who knew how everything worked. You are so important. We can’t lose you. Please, wear a mask. You are needed. You are irreplaceable. You are loved.
With gratitude and respect,
Your patient,
Jane