People are starting to realize that Long Covid is having major economic and social consequences. About 7% of the population is suffering from the long-term effects of Covid and it’s costing the US economy trillions of Dollars. Research for addressing this issue is ramping up but it’s not enough, and I should know. I’ve been suffering from Long Covid for 10 months now, and it’s completely rewritten my life.
We still don’t know what Long Covid is, but researchers are narrowing in on the cause. What seems certain at this point is that it acts like an autoimmune disease, attacking the whole body. The list of crazy symptoms I’ve experienced since having Long Covid is a mile long, but the most persistent symptoms for me are fatigue, brain fog, and something called PEM (post exhaustion malaise). PEM happens when you do too much physical or mental work. Even if I feel fine while doing the work, I’ll get crushing fatigue later that day or even the day after.
To be fair, my experience is better than a lot of people with Long Covid. I’m able to function close to normal for about half of the day, with several rest times baked in. This begs the question, how can I still run our agency amidst all this suffering? I want to share some of the lessons I’ve learned that have allowed me/us to weather this storm.
It wasn’t easy at first. I kept trying to push past the fatigue, which just doesn’t work with Long Covid. Living with Long Covid is living with a disability. Some people recover from Long Covid in a few months, some still have it from their original exposure. Trying to “fight” against this new reality just wasn’t helping me, my staff, or our clients. Which leads to the first lesson.
Lesson 1: Pace yourself
Over time, I learned how much activity I can handle in a day; and because of PEM, even if you have energy you have to discipline yourself not to do too much. Pacing is a known medical treatment and sadly, is the best treatment for Long Covid fatigue to date. Increasing activity has to be done intentionally after you’ve proven you can handle what you are taking on. My whole life needed to slow the heck down.
Lesson 2: Focus on yourself first
Just like with the airline safety demonstration, put on our own mask before helping others. I needed to focus on myself before I was best able to help those around me. In addition to all the medical concerns I’m addressing, I decided to figure out what I needed through journaling.
I have never had a daily journaling practice before, but it’s been instrumental in helping evaluate my mental and physical state. As a result, I feel like I have a better understanding of my internal workings, perhaps more than any other time in my life. This can be life-giving, and helps me to be honest about what I can and can’t do, and what I should try next.
Lesson 3: Delegate and cut out the waste, but not the fun
We have a small staff that I have had to lean on during this time. In fact, I’ve transitioned more from deliverables to coaching and mentoring the staff as I ask them to take on more responsibility. This transfer of control is always a little scary for managers, but is necessary for an agency to grow, regardless of Covid. Another silver lining.
With Long Covid, every step you take, every conversation you have, every worry that plays out in your head, draws from a limited well of energy. Thankfully, we have a fully remote company which takes away a lot of daily stressors like a long commute or managing an office. In addition, I now try to have shorter, more concise meetings. The default meeting time is now 30 minutes instead of an hour.
Finally, it’s important to maintain the parts of your life that bring you joy. Long Covid can physically cause depression and anxiety, finding enjoyment where you can is a buttress to the malaise.
Lesson 4: Practice grace and expect it from others
We talk a lot about grace in our agency, but if you don’t already have a practice of grace, you might need to adopt one to face challenges like Long Covid. We expect grace from each other and from our clients. In response, we practice grace with our clients, with each other, and with ourselves. That last one is essential.
Grace is an acknowledgement that people go through stuff. Grace calls us into forgiveness in a time when expectations are not met. There still might be consequences, but oftentimes grace initiates conversations that lead to healthier expectations.
I’ve had to have a lot of conversations with clients lately about how their projects are getting pushed back. I am grateful for the understanding that has been shown.
Lesson 5: Get help
In addition to all the medical care I’m receiving, I’ve asked a lot of people for help. I’ve asked my spouse to take on a bigger parenting role. I’ve asked my social circles to stay connected, but not to expect my participation. I’ve asked my staff to take on a bigger role. Another great source of help for me is to meet with others suffering from Long Covid and to participate in positive online communities of people who have experience with Long Covid.
One of the issues with a small agency – one that bills by the hour – is that if I’m not producing, the company is producing less. Despite a decent backlog of signed contracts, cashflow has been tight, both personally, and for the company. The way we are addressing the agency needs is by hiring a short hour pro to help pick up the hours we’re losing.
How can you Help?
Lesson 6: Advocate for people suffering from Long Covid
When you are suffering from Long Covid, it’s hard to find the energy to advocate for yourself. We need others to pick up the mantle.
Long Covid is getting hard to ignore, but our approach to addressing the massive cost to lives and economies is lacking. I get that it’s hard to treat an autoimmune disease (assuming it’s an autoimmune disease), but we’ve nearly cured AIDS. We’re not starting from scratch, but we need to be throwing 10 times the resources at this issue. In addition, individuals need help. I’m not loving that we’ve eaten through our savings to pay for medical bills and living expenses, but I also know a lot of people who are worse off than us. This disease is ruining millions of lives. People need help.
You can advocate for Long Covid sufferers by supporting the people around you that have it. This disease is hard to diagnose (it took me 6 months!) and can look completely different from one person to the next. A lot of people suffering from Long Covid have been met with disbelief from employers, friends, family, and even doctors. Sadly, almost every day someone posts on Reddit that they want to kill themselves because of Long Covid. These people need understanding, not skepticism.
Second, you can advocate for the government to take more action. Contact your political representatives and support the Long Covid Moon Shot, an initiative started by Bernie Sanders to get the US to invest 11.4 billion dollars in Long Covid research.
Learn more here: https://longcovidmoonshot.com/
Lesson 7: Vaccinate, mask, and practice social distancing
The practices that we adopted in the midst of the pandemic are still incredibly important because of Long Covid. First off, you do not want to get Long Covid. If you do get Covid there are ways to help you avoid or mitigate getting Long Covid, but they only have a marginal impact.
For people that already have Long Covid, getting reinfected with Covid could be devastating. It doesn’t appear as though people build up an “immunity” to Long Covid. If you had it before and are exposed, you’ll likely get it again. If you already have it, it can get much worse. For this reason, don’t expect people with Long Covid to attend in-person meetings or public gatherings, especially indoor ones. If they do need to attend work and come masked, respect their choice by masking in return when around them.
It goes without saying that keeping your vaccine current will protect you from Long Covid and will protect those around you with Long Covid. Please keep your boosters up to date.
Feel free to reach out if you are experiencing Long Covid or are trying to adapt to how it is affecting your workplace. I will do my best to engage or point you to the best resources.