What long COVID taught me: How to help a friend with chronic illness

I’d been sick for at least eight months when I finally did enough internet research to diagnose myself with long COVID. It felt simultaneously like a relief and falling into a deep, dark hole when the long COVID clinic at Sheba Tel-HaShomer Medical Centre confirmed the diagnosis. Finally, there was a name for what I was going through, finally an explanation for this collection of strange and inexplicable symptoms, why my brain didn’t seem to work the right way, and why it couldn’t form words into a sentence like it used to.

But also, there was suddenly an understanding about the length of the road of my recovery, coming face to face with a chronic disease that, while fairly widespread, is not well-understood.

I’ve been sick for almost a year, and some days I feel like I’m starting – slowly – to emerge from the shadows and back into my life. Now I’m taking stock of everything I’ve missed over the past year and the way certain aspects of my life have crumbled as I’ve been invested in daily survival and let everything else fall away. Now that I’m starting to feel better, I’m sharing a few words in the hope it might help people support others going through this ordeal.

Here are a few questions people asked me while I was sick along with some suggestions for better ways to show you care.

Are you feeling better?

I got this question a lot, and every single time it made me cringe. I know it was asked with the best intentions – the person asking really, really wanted me to be feeling better. But a lot of the time, the answer was no, I’m not feeling better. Because of the way the question was framed, it made me feel like I was a disappointment, or had done something wrong, or like it was my fault because I simply hadn’t wanted to get better. It highlighted the fact that I wasn’t improving, wasn’t making the progress everyone wanted me to be making. It made me feel like a failure.

Suggestion: Try a more open-ended question instead. How are you feeling today?

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What have you been up to lately?

When someone has a chronic disease or injury, their life suddenly becomes so much smaller. It’s like a drastic zooming-in, with the contours of life becoming not much wider than the walls of your bedroom. Compared to what my life used to be – gallivanting around different countries for work, dropping everything to cover breaking news, jumping into the car and driving hours to hot springs at the mere suggestion, embarking on adventures near and far – what I’ve been up to lately is pretty much investing all of my energy in simply trying to get through the day. This question made me feel like a massive failure because my life was so much smaller and monotonous than what it used to be, so much smaller than a so-called “normal” life.

One of the things I have learned after the past year is how to shift what it means to have a “productive day” or a “good day.” I used to try to cram as many things into my day as humanly possible, darting from one activity to the next, squeezing in drinks with friends and attending a yoga class and going for a swim. Everything possible. Now, a victory counts as making my bed, washing my hair, or going to the grocery store on my own. It’s embarrassing sometimes to bring these up as examples of what I’ve been up to. But a solo trip to the grocery store constituted a major milestone for me.

Suggestion: Ask questions that focus on the small accomplishments, rather than asking about the big picture. Try: What are some small victories you are celebrating right now?

* * *

But you don’t look sick!

I know this sentence was often said with good intentions, that people meant that despite everything, I looked physically fine, like I was holding it together pretty well. But throughout this journey, by far one of the most difficult people to convince I was really sick was myself. It’s true, I didn’t look sick, and so I couldn’t let myself believe that I was sick, so I would push myself further and harder physically than I should have, spiraling into a cycle of exhaustion and sickness that was even more difficult to emerge from. This has a fun name in long COVID terminology: post-exertional malaise. Almost sounds like a tropical drink.

On my worst days, I sometimes darkly wished for the type of sickness or disability that would be visible to the outside world, so that maybe people could understand how absolutely awful I felt inside. (Ironically, a few days after I wrote this, I began having what’s called a “dermatological manifestation of long COVID.”. It was both insanely itchy and also oddly affirming to actually see before me physical proof that long COVID does exist in my body.)

Long COVID is a finicky beast. On some days when I felt better physically, the cognitive brain fog would make trying to work excruciating. I am a writer and have been as long as I have known myself, capturing stories and watching the sentences flow out of me and unspool across the page. But with the brain fog, I would stare at a blinking cursor for minutes at a time, grasping blindly for each word, searching in the depths of my mind. Finding each one was like pulling teeth and then trying to make them cooperate into a full sentence felt impossible. My articles took me four or five times as long to finish. I didn’t look sick, but without my ability to write, I don’t even know who I am.

Suggestion: Don’t focus on appearances. Many sicknesses, including mental health issues, are invisible to everyone except the person who is experiencing them. Try: What are you doing to care for yourself during this time?

* * *

Are you vaccinated?

Long COVID is still a new phenomenon, but as far as most research shows, vaccination isn’t connected to whether or not someone who gets COVID also gets long COVID. And frankly, it’s none of your business whether I’m vaccinated or not. I don’t want you to use me and my story to prove or disprove your decision to get vaccinated or not. Personally, I am vaccinated, and very much believe in them. But I sometimes felt like people were using my sickness to bolster their decision to not get vaccinated. Everyone makes their own decisions about their health. So let’s not even open that can of worms.

Suggestion: Try instead asking nothing.

* * *

My friend’s cousin’s coworker’s dogwalker has long COVID, and they went to the most amazing healer, I’m going to send you their information right now.

This is a tough one because I know that it really came from a place of wanting to do something concrete to help, which I appreciated. But as someone dealing with a chronic illness, I went through waves of being open to these therapies or suggestions, certain that someone must be able to help if only I could find the right person.

Over the past year, I tried dozens of doctors and alternative healers, lung specialists, diabetic clinics, every type of blood test available, physical therapy, nutritional counseling, cognitive occupational therapy, speech pathology, acupuncture, reflexology, naturopathy, taking dozens of supplements, rebirthing breathing, wind cups, aromatherapy, hopi candles, personalized Bach remedies, yoni steaming, and mind-body healing.

I had a crazy acupuncturist who provided me with a new conspiracy theory at every appointment and a naturopath through my health care provider that tried to get me to purchase expensive supplements so she’d get a kickback. I’ve spent thousands and thousands of shekels and hundreds of hours on alternative and conventional treatments and doctors.

In order to go to these experts, you need a) money and b) hope. Sometimes, both of those accounts were running dangerously low. Sometimes, I needed to take a break from trying too hard to heal myself. At the end of the day, healing from long COVID seems to be more about just letting the disease take its time and allowing my body to slowly fight this virus and slowly recapture some of my old strength. It seems that with this illness, there wasn’t so much I could do to minimize the symptoms, I’ve just had to let it take its time.

So there were waves of feeling gung ho about healing, and times when I was feeling so hopeless that I simply couldn’t hear about another healing possibility.

Suggestion: Instead of barreling ahead with your good intentions, let them take the lead in letting you know if they are looking for new ideas for healers or treatments. Try: “I know someone who also went through long COVID. Are you interested in hearing about someone who helped them? If not, feel free to check back in with me when you’re feeling more open to it.”

* * *

What do you need?

Most of the time, I was so focused on my own survival that I couldn’t even tell you what I needed. This open-ended question was really hard for me to answer. Frankly, I needed so much, that I didn’t know where to start. I drove a car for months in the Israeli summer without air conditioning because I couldn’t even figure out how to ask about fixing it. In retrospect, it seems insane, but that’s what happened.

I happened to be in a rather unorthodox living situation when all this went down, purchasing my own caravan and living as part of an ecological community on a farm about half an hour south of Tel Aviv. Living in community comes with its own host of challenges, but being chronically ill while trying to be part of a community, and trying to learn to ask for help, is its own special journey.

My caravan was constantly a complete mess because it’s so difficult to be sick in such a small space. I couldn’t stand up long enough to cook, so I was completely dependent on my community to feed me (which they did, bless their hearts). What I’m trying to say is, sometimes it’s really difficult to verbalize what you need. The things that were most helpful were when people came and offered specific things. Things like, I’m going to be in the area, do you want to sit and have a cup of tea together? I made some lentil soup, can I bring some over?

This New York Times article, I think, sums up the best way to support someone going through a rough patch or really the best way to support any relationship in general: When someone is struggling, ask, “Do you want to be helped, heard or hugged?”

Sometimes, I had specific needs, and I was really grateful for the assistance. But sometimes, I didn’t want to troubleshoot and look for solutions, I just wanted to bitch and complain and release anger and frustration and grief over the situation. And sometimes, I just wanted someone to mother me and hug me while I cried. When you’re dealing with a chronic issue, you lose so much agency. But when someone asks you what kind of support you need right now, and you get to decide, that gives you back a little bit of agency and independence, and that can be the greatest gift of all.

I’d like to add another H option to the question of being helped, heard, or hugged – playing hooky. Long COVID and being sick occupied so much of my day, so much of my mental space and my energy, that a lot of times when I saw people I did not want to talk about it for even a moment longer. Of course, they wanted to know what was going on, hear the latest updates and symptoms. But sometimes I just wanted to play hooky from being sick for a while, to escape into a stupid Netflix binge, or to relax next to the sea or a lake and not think about my physical body and limitations.

Suggestion: Don’t ask, “What do you need?” Try instead: Do you need to be helped, heard, hugged, or play hooky?

In general, these questions and the tweaks that I’m suggesting are all variations on the same theme: let the person dealing with the chronic issue lead the way. Ask open-ended questions that let them tell you what they do or do not want to talk about, or where they do or do not need support. But even if you’re not sure what to say, or worried you’ll say the wrong thing, keep reaching out. It’s so much better to say something awkward than not to say anything at all.

Before getting sick, I had a talent for being proactive about maintaining relationships. I regularly keep in touch with a wide network of people from all walks of life and different chapters, but over the past year I haven’t been able to do that at all. Some stayed in touch, some fell away. Even though I was constantly surrounded by my community, and I even made a new long COVID friend, I felt incredibly lonely. The isolation and loneliness of being sick and cut off from the wider world is one of the worst side effects of chronic illness. So even if you don’t know what to say, a simple “thinking of you” message, phone call, or visit is important.

The most important thing I learned this year? Be kind. You never know what internal war people are facing at that moment. The people who yelled at me at the pharmacy for cutting in line because I wasn’t able to stand vertically for that long only saw someone who looked young and healthy trying to cut them – violating the 11th Israeli commandment “Thou shalt not cut in line and make someone look like a freir (sucker).” They didn’t see my reality – someone afraid and alone and trying desperately to keep her swaying body upright as vertigo made her spin in space.

It’s been a year. Some days I feel like I’m slowly emerging from the clutches of this virus that has wreaked havoc on my life, my body, and my mind. Other days I slide backwards and can barely get out of bed, and feel even farther from who I used to be. I’m working hard on accepting that this might be my new reality.

Thank you to everyone who tried to support me in a million ways, large and small. I’m grateful to you. I hope this helps you support others who are also going through this. Above all, just remember: Be kind. Everyone you meet is fighting a hard battle.