Into the A+ Advice Box runs twice a month on the first and third Fridays where A+ members can ask us advice questions about just about anything and receive those answers anonymously. It’s one of the ways we say thank you to our members! Curious about A+? It starts at just $4 a month or $30 a year and proceeds go to support everything we do at Autostraddle. And if you’d like to donate a membership to someone who can’t afford one right now, or if that sounds like you and you’re interested in a free membership, we encourage you to check out our A+ Gift Membership Pool!

Sometimes, we get questions from members where the answers could be whole posts in and of themselves! This is one of those questions.

Q:

I’ve had long covid for over eighteen months and it severely limits what I can do. I can’t travel far from home and can’t be out for more than a few hours on a good day. I am making extremely slow progress but don’t honestly expect to ever recover fully. I don’t know when or if I’ll be able to visit some friends and family who live further away and I fear I won’t ever see my grandparents, who can’t travel to me, in person again. I also don’t know if dating will be an option again (not sure if I want it to be but I would like to have the choice). Do you have any advice for how to deal with the uncertainty and fear of forced isolation and choices being taken away when the pandemic limitations that everyone else has experienced are now lessening?

A:

Dear Friend,

I meant to answer your question yesterday, and two days before that, and two days before that — but, like you, I got Covid eighteen months ago and none of my days have gone as planned since then. None. Like for really real zero days. I’ve had some wonderful days and some good days and some normal days and some truly, truly awful days since the fateful day the doctor diagnosed me. What I haven’t had is days that have gone as I hoped or expected they would. Bodies are weird as heck at the best of times; throw novel, global pandemic-causing post-viral illnesses and disorders at them and watch them go even more berserk.

Which is your whole entire point, right? You don’t know, from hour to hour, whether or not you’re going to have a mostly regular day, or if your body is going to steal your breath, your appetite, your strength, your energy, your cognitive functioning, your ability to take a shower, cook your meals, do your job. You don’t know if your joints are going to be on fire, or your brain is going to be fogged up, or even if you’ll be able to get out of bed. And if you can’t plan for what your own body is going to do, how in the world are you going to include other human beings in your schemes for fun?

You can’t say yes to having lunch with someone tomorrow because — well, for starters, if your doctors are anything like mine, they’re telling you you’re still very immunocompromised and to stay away from other people as much as possible, even if they’re vaccinated, or masked, or outside. And also because you have no idea how you’ll be feeling at lunchtime tomorrow. And even if you’re feeling as great as you possibly can, lunch with a friend is going to drain you in ways you never experienced before you got sick. And ‘yes’ to lunch means ‘no’ to lots of other things, like being able to process what you read for the next few days, or being able to participate in work meetings, or being able to call your sister on her birthday which is also tomorrow.

One of the reasons it’s taken me so many tries to respond to your A+ Inbox note is because I’ve been wiped out by things I didn’t expect on the days I planned to answer you. For one thing, some friends asked to come visit me, from Georgia to NYC, for the third time since I got sick, and I had to explain — again — that we can’t have people in our house who’ve been traveling, and so we’d have to socialize outside in very unpredictable late autumn weather, and that I can only socialize for maybe two hours at a time, and on a good week I can socialize one single day, and I don’t know what that day will be ahead of time, and all the cleaning and cooking prep work I’d need to do to have my house ready for visitors would wipe me out for multiple days, and I would need to take an entire week off of work to be able to see them for even just a few hours one day, because I can’t anticipate what’s going to zonk me at my job on any given week, if someone’s going to suddenly schedule something that’s going to require me to be on Zoom (the number one brain and energy zapper in my life), or some Instagram commenter’s gonna go off and derail everyone’s entire emotional day, and on and on.

That hurt my friends a lot because: they saw on social media that I walked to the waterfront, which is like an entire mile away, the other day; that I’d started a new treatment for one of my symptoms and it was working; that I was able to shop for my own groceries now; that I was taking a Zoom class that’s two hours a week; that I’d written something I won an award for; that I had a friend over to sit in the backyard for her birthday. Am I not getting any better? Do I not want to see them?

The great irony is that these conversations about what I can’t do also wipe me out, not just because they take time and energy, but also because they’re stressful and force me to rehash my deepest insecurities to protect myself. Someone is always leaving them with their heart in a knot, often feeling like I just don’t love them at all. And of course they don’t mean to question the ways Long Covid absolutely dominates my life, but they do. Re-explaining myself, re-establishing my boundaries, re-living all my limitations in every conversation over and over: it drives me away from the people I want to see — and who want to see me! — the most.

It’s getting worse now that people are returning to “normal” — the world is going back to the way it was, but we’re not going back to the way we were. And, like you said, we maybe never will.

All of which is a very long-winded way to say that I understand what you’re going through so very much. Every task you do now costs you more than most people will ever understand. Saying no and saying yes all come with physical, emotional, and cognitive repercussions. Even the most well-meaning of your friends and family and co-workers probably don’t fully get it. It’s a lonely, heartbreaking thing to have to draw such hard lines between yourself and the people you love the most. You have to keep them away when having them near is what you really want. But the other option could be catastrophic to your health (most people probably think that’s a dramatic reach, rather than a proven medical fact for people with post-viral illness).

You asked for actual advice, which I am generally terrible at giving, but here’s a handful of things that have helped me a whole lot.

Make friends with other chronically ill people. 

Even if it’s just online in support groups, hanging out with other chronically ill people is a total game-changer. It can be Long Covid-specific, like the queer-founded and queer-run Body Politic support group, which is super active on Slack. Or it can be support groups on, say, Reddit or Facebook with other folks who have the disorders you’ve been diagnosed with post-Covid, like maybe #MEAction, Dysautonmia International, or POTS UK. These people understand what you’re going through, and can offer emotional support, doctor recommendations, symptom advice, and so much more. It makes me feel a lot less alone to be around people who are going through Long Covid, too, especially because they totally get it about having very limited time and energy so everyone interacts as they’re able with no guit-tripping.

Become fans of other chronically ill people.

In addition to making some really good chronically ill pals over the last two years, I’ve also become a great admirer of so many chronically ill creators. There’s queer folks like Jessica Kellgren-Fozard, a chronically ill YouTuber, who makes loads of videos with her wife and their baby about all kinds of topics ranging from chronic fatigue to EDS to LGBTQ+ history to vintage fashion. She’s the coolest! And Alice Wong, of the Disability Visibility Project, who is a brilliant and engaging queer writer and activist. She is so rad and also does a lot of her tweeting in the middle of the night, which is perfect for when I am awake with chronic pain! And Meg Jones Wall, our resident Queer Tarotscopes writer, who also has loads of content on her social media, plenty of books to buy, and lots of podcast appearances to listen in on. And MXDevin, a chronically ill blogger and Instagrammer who is always sharing so much kindness and candor with their followers.

There’s so many chronically ill people out here who are dealing with their bodies acting out on a daily basis, while also making such great art, and finding ways to date and marry and have kids and all the other things non-chronically ill people do! My Insta and Twitter and YouTube feeds are full of amazing chronic illness creators and influencers and artists and writers now. It helps me to be surrounded by people living their dreams regardless of what their bodies are doing. (I don’t mean “powering through”; I mean honoring their bodies while also following their dreams.) I’ve also found that the chronic illness community is incredibly queer!

Find non-quality time ways to show your people you’re thinking of them. 

Autostraddle TV Team writer and Social Media Co-Director Valerie Anne is one of my best friends, and she is also my neighbor! But we don’t get to see each other a whole lot these days because of all the things I mentioned above, even though we both love hanging out and talk-talk-talking for hours and hours at a time. Lately, I try to find other ways to show her how much she means to me. I drop off little presents at her house from time to time, even though I can’t stay and play. I send her letters and little trinkets for her murder investigation business in Animal Crossing. I text her memes, I talk to her on Slack about our favorite TV. And she reciprocates that affection in the same way and lets me know that she does feel cared for even though I’m loving her with a love language that’s not #1 for either of us. There are ways to connect, even if they’re not the ways we’d have chosen before we got sick.

Find a therapist that specializes in chronic illness.

I am having the best therapy of my entire life right now and I have never even spoken to my therapist with my voice. Zooming is very hard for me, talking on the phone is very hard for me, traveling to an office on a weekly basis to talk to a therapist out loud is absolutely impossible for me. So I did a lot of research — and took some advice from one of those chronically ill creators I mentioned earlier — and chose to try type-chat therapy through Better Help. It’s not super cheap, but you do get a discount if you have a disability like Long Covid! And you can choose a therapist who specializes in chronic illness and meet with them weekly to type-chat live! It works SO well for me. I was on a terrible depression spiral when I connected with my therapist, and she has helped me in a zillion ways I never expected. This medium probably doesn’t work for most people, but it works awesomely for me without draining my energy! Maybe it could work for you too?

Like you, I’ve been at this now for a long time. I’m a lot better at managing it — physically and emotionally — than I was even just six months ago, but it is still so hard. Some days, I get so discouraged and overwhelmed I end up back in bed literally hiding under my covers. But I always get back up to try again the next day. If things can go wrong with my body at any time, they can go right at any time too. Right? That’s what I tell myself anyway!

You are in my heart, my friend. Chronic Illness can be so lonely, but you’re not alone, even though I know it often feels like it. We’re in this together, me and you, and so many other queer people like us.

love,
Heather

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