How to be an ally and friend to someone with long COVID
My wife has long COVID. It took us a while to claim that as a label, but with endless doctor’s appointments, tests, and research we’ve come to embrace it as the not-so-helpful umbrella that captures the mysterious and scary hodgepodge of cardiac and respiratory symptoms that she has developed since contracting COVID last July.
We’re navigating our flawed medical system as best we can — seeking out doctors that actually believe in post-COVID symptoms and avoiding those that will quickly call it anxiety or refuse to wear a mask around their patients with respiratory disorders.
At the same time, we’re navigating our social worlds. We’ve lost trust in some folks, but we’ve also come to value people that really show their care. Still, my growing intuition is that many friends and colleagues really don’t know how to show care.
Hence, this little listicle: a short guide to being a good ally to those with long COVID, with implications for many invisible health disabilities.
Step 1. Deal with your own insecurities about being a mortal human being
COVID impacted all of us, but in very different ways. Some of us have escaped unscathed, some of us have lost one or more people because of it. But all of us — consciously or not — have had to face the deep, existential fear of an unknown threat to us as individuals and to our ways of being in community. We’ve had to ask questions about our willingness to take personal risk, what kind of in-person interactions are “worth it,” and what we should ask of others in the name of public health.
Some people have directly confronted these questions. My wife and I have had long, deep conversations about what kinds of risk are worth it. “If I get sick because of this event, would I be okay with it? If I caused someone else to get seriously sick, could I live with that?” Because of her health, we are still having these tough conversations. Allies in this fight have also considered these questions. Even if we don’t agree on the specifics, I’m comforted when people have at least done the work.
Other people — and the people I find hardest to trust these days — are those who haven’t asked themselves these questions. They’re unwilling to face ideas about how we should change in response to this pandemic. They deflect in conversations— “not that many people are dying” — and they minimize COVID fears to the observation that we all take risks every day. Yes, we do, but have you really confronted your mortality in a way that I can trust you’re really thinking about what that risk means? Folks that haven’t thought about these questions on their own often struggle to engage when long COVID comes into conversation.
Step 2. Don’t shut down when long COVID comes up
When long COVID does enter the room, many people aren’t sure how to talk about it. I get it — I too have had my own moments of discomfort when someone talks about an experience (e.g., racial discrimination) that I can’t directly relate to. But, after doing a bit of Step 1, you’ll be more prepared to actually talk about it.
First things first: at least for us, we’re happy to talk about it. If you’re not sure where your friends stand, you can always ask, “Do you want to talk about it?” I am more than happy to talk because it feels like this thing we’ve had to grapple with behind closed doors, and I am pretty bad at asking even very close friends to sit in that dark space with me.
But what happens after “how are you feeling?” and the subsequent “it has been hard”? We’ve had many very awkward moments with friends where someone asks the first question, but isn’t sure what to say next. The worst outcome here is that someone changes the conversation out of discomfort. That immediately sends a message that we can’t talk about the very thing that’s been at the center of our lives for a year now.
Instead — and boy is this just a good active listening skill that I too have had to learn — take a moment to validate. Make eye contact, nod, if it makes sense for your friendship, lend a hand or a shoulder touch. There aren’t perfect words here, but things that land reasonably well are, “that must be really hard, I’m sorry.”
After really sitting with the emotions of it and asking gentle follow-up questions, “is there anything I can do?” is a nice thing to hear even if it’s unclear if there is. For us though, it’s opened up arrangements for people to walk our dog (especially when we were both immobile) or just an acknowledgement from us that it’s nice to talk about it.
Step 3. Do more than talk about it
Voicing support is nice, but it’s not everything. There actually are things you can do, but those things may be different for each person and each type of disability.
Keep planning events, but in outdoor spaces
We still want to see people, but we haven’t been dining or drinking indoors for years. I deeply appreciate when friends or colleagues plan events and invite us with clear COVID considerations — the biggest one being an outdoor setting. I can’t speak for everyone, but if you have COVID anxious friends, something outdoors and spacious feels way safer and helps us feel seen.
Advocate for ventilation
Improving ventilation is one of the highest impact practices when you do need to be indoors. Almost all of us have been spending way too much time in poorly ventilated spaces — it’s bad for everyone’s health. My wife and I want to inhabit better ventilated spaces but we also get tired of asking for it. If you’re planning something with friends or colleagues, try to choose spaces that have decent ventilation — many places have measurements to show this — or bring your own air filter. You can even DIY an air filter by creating a Corsi-Rosenthal box. Minimally, you can open the windows.
Normalize mask wearing
We still wear masks inside and I will probably always wear a mask while traveling. I personally don’t expect everyone to keep masking but I also don’t want to feel like a total outcast for wearing one. Two things help: others putting on a mask (even having one other person in the room makes me feel less self conscious) and normalizing mask wearing. There have been several moments in meetings where others have noticed my mask and put on theirs — I can’t express how much this feels like real allyship.
Another thing that helps is when event organizers make a statement about mask wearing, something like “it is optional and we support our colleagues who have decided to do so.” Even better is encouragement to quarantine and test if you feel sick.
Be forthcoming about contact and stay home when necessary
My wife and I still avoid high-transmission spaces and we also do not want to be in second-degree contact with those spaces. If you’re going to see a friend with long COVID after travel or other high-transmission events, please let them know and ask them if they’re still okay with seeing you. Offer to take a COVID test (these are imperfect, but better than nothing) and propose future dates to see each other if necessary.
Even worse is not being transparent about your exposure. For example, don’t go to a huge indoor concert without a mask and tell someone with long COVID about it while you’re hanging out with them the next day. This is a sure way to trigger simultaneous panic attacks for me and my wife. It also immediately strikes a blow to my trust in someone.
Relatedly — dear god — please stay home if there’s any chance you’re sick. Even though millions of people died of COVID and thousands of people die of the flu each year, we’re still somehow back to pretending like respiratory viruses are no big deal. They are. Some of us will never be the same because of them.
