A how-to guide for Covid Conscious friendships

A letter to my friends

Photo by Andrea Riondino on Unsplash […and no, that’s not me in the picture]

Update: I can no longer recommend nasal sprays after doing a deep dive into the topic and learning that there are serious issues with nearly all the studies. Best to use masking, air purifiers, and other swiss cheese model steps.

I have been meaning to write a letter to all my friends (and anyone interested) about how to be friends with a Covid Conscious/Cautious (CC) person (like me!) now that my life and precautions have so drastically evolved. From experience, I’ve come to learn that it’s an especially confusing, awkward, and difficult topic to broach for a lot of people (including myself), particularly since masking has become so politicized over the last five years and so much misinformation and disinformation prevail in the discourse around Covid.

While I’m going to share my own letter below, I also wanted to share an amazing and incredible resource made by tesladrianne, whose slides below (click through for the full carousel) are also a GREAT primer if you want to share with your friends (and who inspired me to finally get around to writing this post). Please also note that this guide is specific to me and doesn’t necessarily reflect the views/experiences/risk tolerance of all CC people.

tesladrianne

A post shared by @tesladrianne

Dear friend,

I’m sure you’ve probably noticed that I’ve been masking a lot more these days, and posting online about masking and Covid almost non-stop. You might be wondering what that’s all about, or if I’ve gone off the deep end and become a hypochondriac. The short answer is no.

Covid never went away, and in fact it can damage every single organ in our bodies and repeated infections hamper our immune systems and our T-cells’ ability to fight off infection and disease (I’ve written about this extensively if you want to check it out.) I myself have been a victim of its brain, lung, and other organ damaging properties. Wearing a high-quality mask is one of the easiest ways to keep myself and others around me safe, especially amidst a quad-demic of Covid, Flu, RSV, and now imminent H5N1.

I’m sure it’s probably confusing to know how to interact with me nowadays. I tell you I’m immunocompromised, but you’re not quite sure what that means. I ask that you wear a good mask, but that’s confusing - there’s so much conflicting information out there! You don’t want to say or do the wrong thing. You want to have fun together, but not put me at risk (at least, I hope not!). You don’t know what “risky” means to me, but you probably know it’s different for me than it is for you. You want to ask me questions, but you are scared to ask. It’s not easy - believe me, I understand!

Given that we’re in the holiday season, when viruses typically surge and abound and people are gathering indoors quite a bit, I’ve written this letter to and for you to help you better understand how you can be a good friend to me and any other Covid Conscious/Cautious (CC) people in your life (though let’s be real, from what I can tell, I’m probably the only CC person in your life). Though my personal definition of being CC and my precautions/risk assessments are unique to me, this letter can hopefully serve as a guide for both our interactions and your interactions with other CC people you may eventually meet. Though it probably feels like a big ask to change some behaviors for me because I’m most likely the only CC person in your life, these steps are not just for me, but also for you; I want to keep us both safe, and I hope that you value our relationship as much as I do and are willing to at least hear me out. So here goes…

Why am I writing this letter to you?

As I’ve written about before, being CC has been incredibly isolating. I’ve felt lonelier than I’ve ever felt in my life. I hardly know any other people like me (immunocompromised, disabled, and/or CC). I feel a mixture of grief, sadness, loneliness, and frustration. I want to see my friends (including you!), but that would often mean putting myself at risk because you probably live a very different life than I do. You might take risks I’m no longer willing to take now that I more clearly understand what Covid can do to the entire body.

I’m writing this letter because I want you to feel comfortable hanging out with me with my new precautions, but I also want to feel comfortable hanging out with you. Though I’m still working on speaking up for myself and setting Covid-related boundaries, it is so difficult sometimes. Especially with people closest to me. Sometimes setting and enforcing those boundaries in person is so difficult, and I end up compromising, which ultimately puts my safety (and theirs) at risk.

Writing this letter lets me say what I need to say in a way that allows us to have a fruitful discussion as a next step. It also opens up an important conversation about consent. When you go out into crowded spaces unmasked and then hang out with me, or when you are sick but don’t tell me when we’re spending time together, you are taking away my ability to make an informed decision about my safety. None of us is perfect, but I hope this letter can get us thinking about how to better and more actively protect those around us.

I value my friendships so deeply, but the difficulty of having these complex conversations has weighed heavily on me and has become a huge burden. Hopefully this letter lightens the load.

So, what are my precautions?

I do a lot of things to keep myself (and others) safe, but they all have a reason and are nearly all evidence-backed prevention mechanisms (there are debates about the effectiveness of the nasal sprays, but they aren’t hurting me so far, so I’ll continue to use them). Nowadays, I:

• wear either a KN95, KF94, or N95 in all indoor settings (surgical and cloth masks, unfortunately, really don’t work)

• wear an N95 if I’m in a medical setting (one of the highest quality respirators for your protection, even if not properly fitted to your face)

• often refer to engineer Aaron Collins’ amazing spreadsheet (where he tests and reviews masks) before I purchase new brands of masks I’m not familiar with

• no longer eat in restaurants or drink inside bars (though I did buy a Sip Valve so I can keep my mask on while drinking beverages in the case that I’m in a crowded outdoor space, or need to drink something inside)

• limit my exposure to high-risk settings when possible (e.g., telehealth appointments instead of going to the doctor’s office when possible, avoiding travel if possible, etc.)

• test using a rapid antigen test (RAT) before hanging out with people and if I am not showing any symptoms (ideally friends who know they are going to hang out with me will limit their exposure in the days leading up to our hangout by wearing a mask when they go out, especially in indoor public spaces)

  • As an aside, antigen tests are great at showing you a positive result when you actually do have a symptomatic case of Covid, but notorious for false negatives (especially with asymptomatic cases, which make up approximately 50+% of cases) because it is too soon, the test isn’t sensitive enough, or the test is incorrectly performed. Some sources say RAT accuracy is less than 30% with the new strains. To reduce the risk of a false negative, the FDA recommends repeating the test:

    • Using multiple tests over a period of time, like 2–3 days

    • Testing again 48 hours after the first negative result

    • Testing again 48 hours after the second negative result

    • Testing again using an antigen test

• test using a Nucleic Acid Amplification Test (NAAT) (which is 99% accurate) if I am showing any symptoms (personally, I use an at-home PlusLife, which I love. The site virus.sucks has discount codes, and a great guide on how to use the machine.)

• use prophylactic nasal sprays containing either ethyl lauroyl arginine hydrochloride (ELAH), Iota-Carrageenan, or ethyl alcohol whenever I’m around others

• use Cetylpyridinium Chloride (CPC) mouthwash daily

• wear glasses in places like planes and other crowded public spaces to prevent ocular transmission

• follow wastewater data and disease trends and posts from the

  People's CDC
  , and listen to updates from infectious disease experts and other scientists like Dr. Mike Hoerger

• have several HEPA air filters running at all times at home

• read medical journals and scientific studies to understand the new ways in which scientists and doctors are discovering Covid affects our bodies

Wow, that sounds so restrictive…so what can you do?

Great question! I am usually okay with eating or drinking outside on a patio if there is good air circulation and it’s not too crowded. I’m always up for a walk (if my energy allows) or sitting on a bench somewhere outside. I’m open to a museum if it’s not too crowded and we both wear high-quality respirators. I used to hate phone calls and video calls, but I have come to enjoy them these days. If everyone in attendance is open to taking a NAAT test with my PlusLife machine and the results are negative, I’m usually okay with being unmasked indoors if the windows are open (an air filter is an added plus).

I definitely miss my old life of going to brunch, going out dancing, going to parties, shopping just for fun, and being a tourist, but unfortunately with everything we now know about this virus, the risks far outweigh the benefits for me.

The ideas above are only a suggestion, and I’m always open to other hangout ideas, especially if outdoors.

But you weren’t taking precautions before…

This is absolutely true. I will own this one. I was utterly delulu and in denial, but it’s no excuse. Even after developing Long Covid and suffering from a whole host of physical and neurological issues and having to cut down my work hours (and even take an unpaid, six month leave from work), I still didn’t take many precautions (apart from getting my boosters and masking on planes, public transport, doctors’ offices, and sports classes). This is partly because I truly didn’t understand the science behind transmission or how/why masks work (spoiler alert, it’s electrostatic charge, NOT the physical barrier). It is also because I didn’t know how damaging Covid is and can be. But, perhaps more glaringly, it was also because 99% of the world went back to normal and I wanted to too - so badly - even though I knew deep down that I couldn’t.

Every time I traveled, or went to a party, or concert, or brunch, or dinner at a restaurant unmasked, I was so worried I’d catch Covid again. But the peer pressure not to mask was so strong (it still is). I was so embarrassed about wearing masks again, and the looks and comments I’d receive (I still am embarrassed or uncomfortable sometimes, but it’s gotten way easier over time). And I didn’t yet understand the science and the risks.

I’ve come to learn so much about epidemiology these last several months, and have tried to educate myself not only on disease transmission but also disability justice. I now know it’s not enough just to keep myself safe (though that’s a huge part of it), but it’s also important for me to keep others around me safe (especially those with invisible disabilities or those who are immunocompromised and may or may not be able to wear a mask or get a Covid vaccine).

I regret not taking masking more seriously earlier, but it’s never too late. My new mantra is harm reduction and so whenever I can try to reduce risk - for myself and others - I try my best to do that. Masking is part of that equation.

Are you going to be CC forever?

It’s hard to say, but probably yes. For me - because of my Covid-caused disabilities, but also for others around me who we should be protecting as well. I may not always be as strict as I am now, but I can’t unsee what I’ve seen. I can’t unlearn what I’ve learned. Covid (and Long Covid) has upended my life. Why would I risk doing that to someone else, when I could just wear a mask to keep everyone safe?

Until the government and our society takes public health seriously and protects ALL its people, it sadly falls on individuals to do the heavy lifting. My masking might not change the world, but at least I can sleep better at night knowing that I am actively working to prevent transmission of a virus that can seriously disable and kill people.

That said, before we hang out…

I would love if you could:

• mitigate your exposure in the days leading up to our meeting (by wearing a mask in all shared spaces and avoiding crowded events/spaces)

• tell me if you had any high-risk exposures before we see each other (e.g., concert, indoor dining, hospital, sick family member/roommate, air travel, etc.)

• take a RAT (if you’re asymptomatic) the day of our meetup, without me asking, and let me know the result (a pic works great!)

• wear a mask to our meetup, even if it’s outdoors (Covid can still spread outside, and over 50% of cases are asymptomatic)

• let me know ahead of time if you are feeling like you have any symptoms (even if it’s NOT Covid), so we can reschedule (with my immune system, even a cold can knock me out for a month)

• tell me if you’ve been around someone who’s sick (with anything)

All of these steps are part of the informed consent I was talking about earlier, and they show me you love me and care about my needs and comfort.

I will do the same for you.

What if I can’t do all those things you’re asking me to do?

I realize that what I’m asking for is probably not something you’re used to at all. It took a lot of adjusting for even me to get used to this new reality as well. It may seem over the top or a lot, but to be honest, I’d rather be cautious than further disabled or dead. I think most people wouldn’t last a day in the bodies of Long Covid longhaulers. Let’s make sure you never get to that point.

I don’t necessarily expect that you’re going to start adopting every single precaution I listed above, but I cannot tell you how much it means to me for you adopt even just a few of them (primarily masking). Masking is a sign of love and solidarity to me. But it also shows me that you understand. You want to keep yourself, your friends, your family, and your community safe. To me, that is a beautiful gesture and one that flies in the face of the pernicious and ruinous individualism that pervades our society (thanks, capitalism).

It is also equally meaningful to me when you show me that you “get it.” We are still living in an ongoing pandemic that continues to kill thousands of people every week, that has killed 1.2 million Americans thus far, and has disabled millions of others. Telling and showing me that you understand the difficulty of my daily reality means the world.

As tesladrianne so perfectly says,

At bare minimum, what I do expect of my closest friendships is the acknowledgement of the reality. It’s very difficult for me to connect with somebody who is living a very, very risky life and not acknowledging that they are contributing to the overall problem. What that demonstrates to me is that our values are in different places (and are perhaps irreconcilable).

However, if somebody is willing to face some hard truths and learn some new things in order to keep themselves and the people around them safe, I am so so happy to go on that journey with you.

I couldn’t have said it better myself.

Well, it sounds like it’s not going to work out

That definitely makes me sad, but I also accept that our values and risk assessments may differ. I’ve already lost a lot of friends over this, and have accepted that I may lose even more. But I’m writing this letter to you to see if I can help us find some common ground. To elucidate what hasn’t been said. To clear up any misunderstandings.

Relationships are about compromise, and while I fully support that, this issue is truly existential for me. The virus has already disabled me, and I don’t want it to kill me (or you!). I’ve put a lot of effort into maintaining friendships that haven’t been filling my cup (as I write about in this piece) and I’m too tired to continue doing so. I want this piece to serve as a mechanism to let you know that I’m struggling to convey certain things that will keep our friendship strong and safe, but I don’t want to lose you.

This is me letting you know that it’s okay to tell me our values are too different and that you don’t want to make those compromises for me. It’ll hurt, that’s for sure. But I’d rather know now.

Connections through friendship have been an important lifeline for me during these last two years, and whatever you choose, I value the time we had together. I hope it can continue, but I understand if not.

Closing thoughts

All friendships take effort and compromise. Friendships with CC people like me take extra effort and compromise. I won’t pretend that’s not true. But the effort I expend daily to survive in this world that makes it really difficult for a disabled person to live and thrive is exhausting and demoralizing. It literally crushes my spirit daily to often be the only CC person in every space I’m in.

Your CC efforts in our friendship (while we are physically/virtually hanging out), but also when we are not, give me strength. It lets me know that in a world that has largely chosen to ignore an ongoing pandemic, someone still believes me. In a world that has forgotten the millions of people who’ve been victims of this virus, it lets me know that you see me and that you still love me. It validates my lived experience, as well as the medical and scientific reality of the virus that is still wreaking havoc on the world.

I hope this letter helped explain where I’m coming from and hopefully can help us better navigate our friendship going forward. I’m always open to (well-intentioned) questions and curiosity, and welcome a discussion about this ahead of our next hangout. Please never be afraid to reach out. And thank you for our friendship.

Love,

Your friend Mel

Note: All my essays are stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.