6 Years with Long Covid

Reflections during Long Covid Awareness Month and the return of a date I wish I could ignore

I’ve felt somewhat detached from my upcoming 6 year Covid-versary. It’s such a long time to think about, it almost doesn’t feel real. As the day has arrived, to be honest I don’t want to look at it. I heard a fellow long hauler call this time of year 'A Vigil’ and I think that is so true. It’s another year farther away from the version of me pre-Covid. The version who was able to be spontaneous, travel, listen to music, and live a full life uninhibited. These ‘anniversaries’ keep coming around, and each one adds another layer of grief to an already layered ‘pit of despair.’

Little boy asks: “Let’s see, where were we?” Grandpa answers: “In the pit of despair.”

Over the past few anniversaries I would spend time thinking about how to honor those who have been there for me over the last year. It’s so important to me to thank those who have stuck by me through all of this, especially as so many friends have not. Side note, if you haven’t listened to the latest podcast from A Friend for The Long Haul, I highly suggest it, as it shares love letters to the Long Covid Community. Each story really resonates on how important these relationships are. Click here to listen.

This year feels different. It’s even more challenging to digest this anniversary. There’s so much devastation happening in the world right now, my continuing experience with Long Covid seems so small in comparison. It’s hard to make space for all of the horrors. Not to mention, Covid conscious advocacy feels even more now like I’m yelling into the void. I think this is just the inflammation talking, because when I really do think about who has heard me in the last year, there are other folks who are immunocompromised who HAVE heard me this year talking about the dangers of repeat infections and have started taking precautions again! So not all is lost, but man does this anniversary feel heavy.

I’ve started dabbling into acrylic pour painting, and it’s really been so therapeutic. I got into it by somehow coming across YouTube tutorials and being mesmerized by the process. Years later I finally started messing around, and it’s become a surprisingly great hobby! It helps me practice more mindfulness, as well as the art of letting go of perfection, and just letting things be. In the spirit of honoring those who have been showing up for me this last year, I’ve gifted a few of my paintings to some of my favorite people. So in a way, I’m still honoring my tradition.

In honor of my 6th year of Long Covid I created a few paintings to help illustrate just how the healing trajectory goes. There’s no straight line, or even throughline if I’m honest. I’m still playing a game of Whack-A-Mole, where I calm one symptom and several others come flaring after. Or I calm one symptom and now I can notice a variety of other symptoms that have been there all along but I couldn’t recognize them. If I dare share even a small percentage of the reality of what I’m dealing with it tends to make able-bodied people very concerned and uncomfortable. One person recently told me “you need to get better soon.” LOL TELL ME ABOUT IT! Then they go about their way, maskless and oblivious that they too could be 1 infection away from the same fate, or worst.

Teal, Pink, Purple and Black swirled on a canvas with the subtle messaging: Get Better Soon

My depiction of the Long Covid healing trajectory. Abstract design with teal, pink, purple and black inks on a small canvas

As I enter this 6th year of Long Covid, I’m no closer to any real treatment. While I am trying several off-label treatments, and they do help, I still have a lot that I’m managing each day. Sometimes just the act of making it through the day, while making sure I’m properly hydrated, nourished and regulated is a challenge in itself. I do feel very lucky and privileged that I’m still able to work, and do so from home. I know I wouldn’t be able to handle working in an office.

I do find hope in knowing there are researchers finding things that can help us every day, so not all is lost. But I’m not going to sugar coat it, this is a challenging experience. I am now looking into a possible Ehlers Danlos Syndrome (EDS) diagnosis, adding yet another acronym to the list of conditions, without any treatment, I’m dealing with. This one seems to make sense of a few different things I’ve had prior to having Long Covid, which makes me feel like this meme as I uncover all of the overlaps:

Man standing in front of a wall covered in papers with red string connecting them, suggesting an attempt to connect complex ideas. Text reads: Listen guys…I’ve got it all figured out!

In the off-chance you’re reading this and you have not (yet) experienced Long Covid, I want you to be aware of a few hard truths:

1. You (vax’d or not) can be 1 infection away from getting Long Covid. In fact, Long COVID occurred in 24% of reinfections in a US cohort.

2. Long Covid is now the top chronic condition in children, surpassing asthma

3. Long Covid is disproportionately affecting marginalized communities

4. You can always start masking again, especially in places where folks like me cannot avoid, like Dr’s offices, hospitals, pharmacies, etc.

5. Clean air can help reduce reinfections, and should be prioritized everywhere (IMO)

6. Long Covid is an invisible illness. If you think you don’t know anyone else with this, you’re mistaken. It’s affecting millions of us, and is still quite common.

Some other excellent resources worth checking out include:

1. The Patient Led Research Collaborative just released their 2026 Long Covid Fact Sheet and is worth a read! Click here to look it over.

2. They’ve also released a Long Covid Treatment Guide for some off label treatments that can be discussed with your doctor!

As I touched on earlier, the longer this goes on for, the more challenging advocacy feels. It’s always so touching to see folks who do not have Long Covid advocate for covid safe practices, share Long Covid research, etc. I’d love to see more of that!

If there’s one thing painting has been teaching me, it’s that not everything needs to resolve perfectly. Sometimes there’s beauty is in the mess, in the layers, the discomfort, in the parts you didn’t plan.

Long Covid has been a lot like that. Unpredictable, nonlinear, and often frustrating. But also a practice in letting go of the idea that healing has to look a certain way, or advocacy needs to fit within a certain box.

Maybe it’s about continuing to show up, however I can, giving myself grace and letting that be enough.

And for now, that’s where I am.