Long COVID and relating

Before I begin, I am not writing this to complain. I am writing so that people who may not have a clue learn more about long COVID, what it feels like, and how to support long COVID patients. We’ve heard about the disease in abstract terms- “fatigue”. “Post-exertional malaise.” “Chronic pain.” “Psychological difficulties.” To date, only this piece by Ed Yong (superhero writer of the pandemic) touches on what it’s like to live through it with any sort of depth.

I have, as mentioned before, long COVID. It has recently escalated to the point where 10 minutes of exertion will knock me out. A shower is possibly one of the most draining things I can think of right now. Let me be clear — it’s not just physical effort. It’s the mental ordering of the steps while my brain is about as compliant as a tomato. Undress, get in, turn the water on — oh wait, that’s wrong, you turn the water on before you get in. Fix it, get back on track, sit down (because I can’t stand for an entire shower anymore), open the shampoo bottle — wait, no, you wet your hair first. Fix it, get back on track, use shampoo, make vigorous scrubbing motions, use conditioner, make vigorous scrubbing motions.

By now, the shower isn’t even done and I’m exhausted enough I collapse against the side of the shower. Also? Everything hurts. We’re talking like pulled-muscle pain all over the body that escalates dramatically with effort.

I’m on medical leave now, because the above state of being isn’t conducive to productivity. Yesterday I thought I had the energy to help with chopping vegetables for dinner. That was a mistake. I was too nauseous to eat my entire dinner after that.

Long COVID is a beast. I have been disabled for about six years now and never, never have I been so thoroughly sidelined by something. Pain brings brain fog and I was (and still am) in chronic pain, so I was used to it, but not to the extent that I forget words like “trash can” for a few solid minutes. I’m a writer, so you can imagine this is a frustration.

That’s why I’m where I am right now, where my only job is resting and giving my cats and dog attention. It is not where I want to be, nor is it easy for me. I am a go-go-go-go kind of person. Even after I broke my spine in a rollover on black ice, I was still writing, working a day job, working another side hustle. I can maybe write on some days now. Maybe.

There’s a big difference between the way I was treated after the rollover and long COVID. After telling people about the first, I had people- some near strangers- assertively showing up with broth and demanding to clean my house and making sure we had groceries. Long COVID? “That sucks. Feel better.”

I don’t say this out of entitlement to help. I do bring it up because I want people to realize that sick people are being expected to be self-reliant at one of the worst times in their lives. I don’t know if people hear long COVID and think, I had COVID! I’m fine! It’s like comparing a headache to a migraine — and we’re not exactly sure what the migraine will do to the body in the long run. Also data suggests 1 in 5 COVID patients will develop long COVID. We’re talking about a widespread, debilitating disease.

Closer friends will say “if you need anything, please ask,” which is nice, but still puts the onus on a person with the capacity of molasses to come up with what needs doing, determine if it’s an appropriate thing to ask for, worry about being “a burden” (because that bit of programming doesn’t go away when you become severely disabled and need help), and ultimately reach out.

Friends and family of all types have asked me like it’s some sort of morality contest. “Well, were you wearing a mask? Do you have your shots? Did you stay in like you were supposed to?” The answer to all is OF COURSE, I don’t have a choice. I’m immunocompromised, so in our one-way masking world, this “personal responsibility” narrative was a foregone conclusion.

People do not like to think about the ramifications of long COVID (and disability as a whole), so they push people suffering away. They’re one unmasked flight away, or worse, one flight where they were masked and nobody else was. One ill-advised restaurant outing. Anybody can catch this, and contrary to a popular bit of misinformation, immunity does not help. I already had long COVID as of 2020; in 2021 I caught COVID again and this time became so much worse. It’s like a venn diagram of suck and I am squarely located in the middle.

If you don’t look at the suffering, you’re insulating yourself from it. “Can’t be me.” Um, can. 1 in 5.

Doctors don’t know what’s going on. I do not blame them; the disease is new. I do blame research for not doing more work on myalgic encephalomyelitis, which long COVID closely mirrors, and other post-viral triggers for the last thirty years. People with ME and fibromyalgia found (and still find) themselves misdiagnosed with depression, forced onto harmful graduated exercise programs, treated like whiny malingerers. I live in fear that my condition will not improve and I will need to apply for disability for long COVID, because chronic conditions like it have been mistreated in the courts and hospitals for as long as there were words for them.

How can I support long COVID patients?

If you’re a doctor, ditch the term psychosomatic from your vocabulary. Just because you see a patient complaining of a gamut of things that may not show up in the bloodwork doesn’t mean they aren’t struggling. And just because you haven’t been trained what to do does not mean they don’t need your help. They need an advocate, someone who will take their symptoms seriously and treat them as they arise, pay attention to the new research, refer out as needed. I am fortunate to have worked with a pair of doctors who referred me to my healthcare system’s long COVID team, which contains one of just about every kind of specialist you could want for a disease that’s still very much an unknown. Not everyone will have access to this, but that doesn’t mean they don’t deserve help.

For everyone, here are a list of things that you can do when someone you love has long COVID (or really, any illness, disability, or injury).

• This one may seem like a no-brainer, but don’t avoid them. Your loved one is not contagious any longer.
• LISTEN. Your loved one is going through a lot at the moment, from the often sudden decline in their body to the (yes, very prevalent) comorbid anxiety and depression, to changes in their life circumstances. One of the sweetest offers I got was when a friend heard me talk about how I can’t cut fabric anymore but miss sewing so much was to come cut for me. That’s not on the usual list of community care things, but it meant so much to me.
• ASK. “Are we venting or looking for solutions?” Your loved one may genuinely not see the way forward out of situations right now, with as much overwhelm as this disease causes. Conversely, they may just want someone to hear them. It’s good emotional intelligence to find out which.
• Understand that likely, your loved one’s life is absorbed with this disease right now. They may talk about it a lot, or on the other hand, may not want to talk about it at all. Hold space, and don’t change the subject because it might be uncomfortable for you.
• Invite without expectations. You might be sick of hearing, “I can’t”, but imagine how sick the sick person is of being sick. It means quite a lot to have people continue to express “we want you around!” even when chances are, our bodies don’t want us to.
• Try to find activities that are low-energy or need to be done anyway. The “errand hang” is amazing. Maybe this is literally just sitting while your friend really slowly does their dishes, or maybe this means rolling up your sleeves and helping out. Maybe you just sit in the same room on your phone and occasionally show each other cat pictures. This is still meaningful quality time.
• If you offer help, follow through. This is not the time for “we should get coffee sometime”-level dedication. If you want to throw someone a life preserver, don’t just talk about doing it.
• If you offer help, be realistic about what that means. New parents don’t love it when people want to come over and hold the baby and call it helping. Sick people don’t love it when you come over and sit at the bedside and call it helping (although being present for a loved one is a form of help!). Be prepared to do something/be asked to do something, and be prepared for the sick person to be thoroughly embarrassed by it. That old bootstrapping self-sufficiency narrative is harmful.
• Be aware that illnesses are dynamic. There was a reason I thought I was good to cut vegetables yesterday — I was having a sort of good day. There are sort of good days, sort of bad days, and then extremes at either end.
• It is EXPENSIVE to be sick. I am on six $15 a month medications for long COVID and several more for managing other conditions. That’s just the meds. Try to avoid high cost activities.

A few long COVID specific ones:

• Be aware that brain fog is enormously frustrating. Your loved one may seem more irritable as they try to navigate their brain, which may feel like it’s betraying them.
• Don’t just assume that your loved one is getting support. As I mentioned above, doctors just don’t know what’s going on yet, and the government is very dismissive of many long term illnesses, but especially COVID, as it has been heavily politicized. Workplaces may be sympathetic, but may not be.
• Getting a virus is not a mark of being a bad person. There are careless actions, yes, but you can still get COVID even if you are being 1000% careful and people around you are not.
• Again, immunity from long COVID is not so much a thing. So if you’ve had COVID before or are (as you should be if you can be) vaccinated, don’t think you’re home free for long COVID. Continue to take precautions to avoid catching and spreading this disease.

There are more, but I am approaching my threshold for being able to Do Things today, so I will leave it at that. In summation:

Don’t treat long COVID differently from any other major life changing event. Check on your loved ones and continue to take precautions, even as the world prematurely opens back up.

And don’t assume that “having nothing to do” but take a shower is easy on a person. Showers are surprisingly difficult. Take my word for it.