When it comes to living with long COVID, there is no bright side, no good part, no silver lining. Trust me. I’ve been battling this chronic illness since early 2020, when people still called it “Corona” and everyone was making Instagram memes about a beer company.
When COVID-19 first arrived on America’s unprepared shores, I was a New York City-based 31-year-old comedian with a promising career ahead of me. Then, in March 2020, I developed symptoms that at first weren’t connected to the original list health organizations gave us of a fever and cough. I was eventually sent to the ER where doctors told my family I had six hours to live. Spoiler alert: I did not die. Instead, I spent 99 days on a COVID ventilator in a medically induced coma, and half a year in the hospital, which as it turns out, is only slightly better than death. When I finally woke up months after being admitted, I was alone in a hospital with a “no visitor” policy, paralyzed from head to toe, voiceless and totally unable to communicate.
I have since relearned to walk and talk, but at 33 years old I’m disabled, living on oxygen 24/7, and forced to fight for my health every day. Adding insult to my injury is the conspiratorial nonsense of COVID deniers, the hollow cliches of well-meaning people, and the empty promises of a toxic wellness industry that claims lavender oil and a keto diet can cure whatever may ail you. I get it. When faced with tragedy, some people struggle to find the right words. So let me help you out by providing you a list of eight things to absolutely never say to someone living with long COVID.
1. “Just think positively!”
When healthy people tell you to “think positively” you realize you’re now into insider trading because the amount of pillows you have to scream into has to have increased Wayfair’s stock prices and you want to get them while they’re hot hot hot. It’s the most empty gesture one can say and if one means it then do you want to trade places with me for even a day and see how chipper you feel by sunset?
Another statement that baffles the noggin is when people say “So glad you’re better!” and then they leave the conversation, how does throwing up three times a week qualify as though I could participate in a MudRun? People’s eyes light up when they ask “So what was it like being in a coma?” Well, I tell you one thing, it wasn’t that cute Disney-fied bright light everyone talks about but more akin to if an ex came crawling back saying they’ve changed only to have gotten worse and have taken up DJing. To put it lightly: hallucinations, delirium, withdrawals, ICU psychosis, subconscious torture, and paralysis was what really happened for a continuum of half a year in the hospital resulting in PTSD—which is cool in the sense that I can add another acronym to my resume (proficient in HTMLs, PDFs, and PTSDs).
When your story is inspiration porn for others to either feel better about their own lives or have a cool tale to tell their friends, you start to feel like a caricature.
2. “You look happy on social media.”
Watching all your friends move on in life with promotions, marriage, kids, and houses as you’re on the sidelines sleeping on your parents’ couch like an incel is not the moment I envisioned for myself. I can’t tell you how many times I’ve texted the word “congratulations” while crying behind my phone screen.
Although I’m not paralyzed anymore I feel paralyzed in time like when Austin Powers was cryogenically frozen and wakes up to find out the Cold War is over. Social media doesn’t help either, as we all just show the highlight reel of our lives with a filter so heavily glazed it looks more delicious than a Krispy Kreme donut.
Meanwhile, as I’m tweeting a frivolous joke about The Real Housewives, I am on my fifth nebulizer of the day. It’s hard to keep up with the digital Joneses when you’re so weak and the last thing you want to do is make a quippy topical statement in less than 280 characters so you can stay relevant.
3. “Manifest being healthy!”
Speaking of achieving life goals, we have to address manifesting. I know this is hard to hear for some folks (especially myself) but sometimes you can think, pray, and plan and yet horrible things happen anyway. Being disabled in a wheelchair was not on my 2022 vision board while not being able to breathe on my own was on my Pinterest board—just kidding, could you imagine if someone willingly pinned a concentrator to their page?
As someone who had yearly fitness, career, and personal goals that then broke them down into weekly mini-goals in an excel spreadsheet like some type of accountant during tax season, having your dreams that you’ve been working towards for years come to a screeching halt is a bit of an adjustment.
If I were at a job interview right now and they asked “what’s your five-year plan?”, I would do a spit take and answer with some nihilistic response of “DOES IT EVEN MATTER?!”
4. “You should do apple cider vinegar shots every morning.”
This leads into my next point: The wellness industry and the clean-eating people. I still have people telling me two years later if I take vitamin D I’ll be healed. Yes, I take vitamin D daily and yet here I am unable to walk more than one minute. Respectfully, sit on a barnacle.
The wellness industry is worth over $50 billion in the U.S. alone, they do not want you to succeed in your actual wellness but to make money off of you. People are uncomfortable in the gray, they cannot handle this happening to a healthy person, their brains combust because sometimes no matter how vegan, gluten free, apple cider vinegar morning shots you take, you can still get sick.
People become holier than thou and try to break down your medical history. Asking “Did you have any preexisting conditions?” is like asking “What was she wearing?” when hearing about a sexual assault. Stop victim blaming, it’s gross. And if you must know, I did not have any; I ate healthy, did boxing, spinning, and barre every week while also getting over 10,000 steps in from walking and living in NYC.
5. “COVID isn’t that bad.”
Being this sick is a full-time job. I am never not in the hospital, emergency room, physical therapy, breathing class, etc. I put in the hours of a Wall Street investment banker with no salary to show for it.
Since this virus is new, all aspects are unknown and my doctors and I are learning together which is uncomforting, however there is no other choice so I have to forge ahead on an unbeaten path. Dealing with health insurance and getting prescriptions is harder than navigating a new Tinder relationship where you see each other every three days but don’t know each other’s last names.
I also have to deal with the “covid is a hoax” and anti-vaxxers and it’s exhausting. I am called a sheep on my TikTok for getting COVID and some even demand I prove to them it was from the virus and not the vaccine even though the shot was not even invented back in March 2020. It takes such an emotional toll and witnessing their smartphobic behavior is laborsome.
6. “Are you dating?”
Living with your parents as an adult is like a social experiment. I went from being fiercely independent, running around to every single borough of NYC for nightly comedy gigs in unidentified basements of dive bars to watching Jeopardy promptly at 7:30 p.m.
When Antiques Roadshow comes on, you better believe my mom is gearing up to watch only to fall asleep five minutes in due to the soft-spoken cadence of the appraisers assessing the item. As soon as I tiptoe over the two feet like an exaggerated cartoon character to change the channel, she is awoken from her lullaby and I am back to square one.
When the doctor asks if I’m sexually active, my mother and I look at each other and immediately burst out laughing. Through our cackles we explain that I am sleeping in the TV room because I can’t walk up the stairs and am unable to walk to the bathroom without having an eight-hour coughing fit which results in me throwing up—so a romp in the hay is out of the question.
Last time I was touched COVID was just a twinkle in our eye. On a positive note, I have been able to teach my mom NSFW terms such as “moose knuckle” and “pegging.”
7. “Just breathe.”
There are privileges you really don’t realize until you live the experience.
Hygiene: I can’t stand long enough to hold my electric toothbrush for the whole total two minutes so I brush my teeth sitting down and use a small bowl with water that my parents give me. It used to take three people to shower me and now I can do it myself by using a shower chair but I only have the lung capacity and strength to do it once a week—silver lining is it does save on the water bill.
Power: I lost power twice during winter storms and it is a matter of life and death. Without electricity I cannot run my concentrator so I had to rely on portable oxygen tanks that only last by the hour. We were counting down tanks and waiting for emergency supplies to come from another state. Let me tell you, I’ve performed for hundreds of people, and this takes the cake for nerve inducing. I use a nebulizer multiple times a day which helps me breathe, so luckily we found the longest extension cord known to humankind and my mom ran it through to our gracious neighbors’ house in the snow like it was some sort of tin can on a rope talking system kids use to use before walkie-talkies.
Transportation: Long gone are the days of just getting in the car and going. Packing to go to physical therapy and my doctor appointments takes hours between the portable oxygen tanks, the wheelchair, the inhalers, the cane, you would think I was moving to college for my freshman year. I can no longer drive, and much to my chagrin Lady Gaga is not my dad’s go-to artist so we “jam out” to his preferred AM radio station.
Breathing: Every inhale is a gift. From being on a ventilator, a tracheotomy, ECMO, and now having nasal cannulas shoved up my nose all day and night like some character from Mad Max, I see oxygen differently now. One of the scariest moments was when I was running out of oxygen on the highway and my parents had to pull over to get an extra tank from the trunk. I felt like a fish out of water, but the irony is I am a person and should have the right to air but I don’t.
8. “Let me know if there’s anything I can do.”
This phrase is so passive. Instead, be active right out of the gate like sending cards, food, little gifts, etc.
My biggest advice for people who know someone who is sick is to reach out. It’s deeply isolating being this ill and not being able to participate in daily activities. That person—no matter what—will want to hear from you. I can’t tell you how happy it makes me when people from my past connect with me. When you almost die and are in a hospital bed alone with no phone or family for half a year and you come back home, you almost have witnessed your own funeral. You see what people posted on social media about you and the kind words they said, you see the cute and/or ugly photos they picked of you—come on Brenda, that picture, really?
I only know who thought and prayed for me because they told me, otherwise I have no idea if the person even cared, so again, my little motto is: When in doubt always reach out. When you do ask, be prepared to actually listen and take in what the person is saying, nine times out of 10 they’re having a bad day and if they feel comfortable to really let you know how it’s going be receptive. Remember, listening to a chronically ill person is not a burden; living with the chronic illness is the hard part, not the other way around.
It’s my two-year “death” anniversary but I’m alive. I straddle between two paths, accepting this is my life and trying to find hope that I will one day get off oxygen and out of this wheelchair. I choose the latter but I tell you everyday is a fight. Rather than blaming the randomness, I try to find meaning in it. Yes, it’s an extreme adjustment but sometimes all you can do is live in the moment.
Untangling my oxygen cord daily is like unraveling the most complicated necklace chain you found at the bottom of your “going out” purse months later when you realized you ripped it off in the middle of the dance floor because it was getting in the way of you doing the worm. Half the time I feel like a chaotic person with a cork board, red string, and thumbtacks trying to solve a conspiracy theory. My body is completely different, I went from being able to lift my friends à la Patrick Swayze to having atrophied arms with the buoyancy and strength of a marshmallow.
When I look in the mirror I hardly recognize myself as my face shape has changed drastically from medication and I look closer to a balloon head. I now wear diapers in my early thirties, and though I do not want to kink-shame anyone, this isn’t my type of fun. Though my journey is scary and unknown, I’m willing to take on the pioneering role into this uncharted territory and I would love to bring you all along with me.
Laura Lyons is a comedian and actress who has been featured in The Daily Beast, NPR, and Time Out. Before the world fell apart, she was a main stage comedy performer at Magnet Theater and on the sketch team BoogieManja in NYC. Follow Laura on Instagram and TikTok at @LauraLyonsComedy.
https://www.thedailybeast.com/8-things-you-should-never-say-to-someone-with-long-covid?source=articles&via=rss 8 Things You Should Never Say to Someone With Long COVID