I was diagnosed with multiple sclerosis about seven years ago. My first symptoms were numbness in my feet which I thought was caused by tight shoes, but by the time I was vacationing in Belize a few months later, I couldn’t feel much in my hands, or from the chest down. I remember the feeling of swimming as though I were wrapped in a cotton sheet, I remember falling down because I didn’t have any proprioception in my feet, and I remember switching to slip-on shoes because I had trouble tying laces.
By all rights I should’ve been terrified when the COVID-19 pandemic started. After all, I’m one of those vulnerable, immune-suppressed people that we’re all supposed to shield from illness, but over the last two years, I’ve found that I’ve had a more stable emotional experience than most of the people I’ve interacted with.
Pandemics are a kind of chronic illness on a societal level. For many people, COVID was the first experience of a health threat that persisted over a long period of time. Dealing with the experience of a chronic illness has taught me some lessons which I’ve found applicable to COVID, and I wanted to share these lessons in case they’re helpful.
You’re Not in Control of Your Health
We’re all basically puritans about health. We want to believe that if we live righteously, do all the right things, and avoid all of the wrong things, we’ll avoid all the horrors of serious illness. When someone has a heart attack, we ask whether they ate right and exercised, and when someone gets cancer, we think back to the years when they smoked.
The reality, though, is that most of the determinants of health are entirely out of our control. You’re born into a particular genetic and social situation and that, along with a whole lot of luck, determines a lot about your health. My biggest risk factor for MS was the fact that I had mononucleosis as a college student in Canada. It turns out that getting mono as an adult while you’re vitamin D deficient radically increases your risk of developing MS later in life, and while there were probably things I could have done to reduce my risk, it was largely set in stone by the time I was 21. Similarly, after diagnosis there are a few things that you can do to improve your outcomes, but aside from taking your medication they’re all pretty marginal interventions. Your individual decisions let you pick which dice to roll, but they don’t determine which numbers come up. Virtuous people still get sick.
Your individual decisions let you pick which dice to roll, but they don’t determine which numbers come up. Virtuous people still get sick.
What I’ve learned is that given all this, there’s a really narrow spectrum of things that are worth worrying about. If something has a big enough effect to change my decisions, and I’m fairly certain that that effect is real, I will look into it, but otherwise I don’t pay attention to it. This means that I ignore all studies on animal models (not certain enough) and all papers about how MS patients do over the course of their lives (doesn’t change my decisions). This is important because worrying about illness costs me something. It increases stress, damages my relationships, and reduces my happiness, and over the course of a lifetime these costs really add up. Limiting what you worry about to the things that actually change your decisions is a vital self-care strategy which helps to keep your background stress level in check.
This is an important lesson as we move into the endemic phase of COVID. Whenever there’s a new variant, there’s a period of several months where we don’t really know anything about the variant, but everyone is still freaking out about it. All of the information at that point falls outside of the constructive worry spectrum. If you don’t really know whether a variant is different enough to change your decisions, there’s no point in really worrying about it. As a result, the resilient thing to do is to just not worry about it and trust that you can come back to the news in a month or two and not really miss anything.
Things Are Never Going Back to (Exactly) How They Were
When you get a chronic illness, there’s a long period where you deeply want things to go back to how they were before you had it. Being diagnosed with a serious illness is abrupt and traumatic and it’s hard to even understand what happened. You suddenly move from being a healthy person with a normal future to something less certain and more limited. It’s natural to want to snap your fingers and go back to the person you were before you got sick.
The reality, though, is that even if you’re entirely cured, things are never going to be the same as they were. My own illness has gone just about as well as it could have—I haven’t had any major relapses and overall I’m probably a healthier, happier person than I was before I got MS. Even so there are a thousand yets and so fars that hang over every moment of my life. I haven’t had any major relapses yet. I’m a healthy person so far. Even in the miraculous case that MS is cured in my lifetime, the process of getting sick is one of the two or three more formative experiences in my life. There’s no way I can undo the past six years.
Abandoning the fantasy that things are going to go back to however they were before is the first step of figuring out how to live with an illness. When you do this, it becomes easier to see that while your life is certainly different, and while it may be objectively worse by some measures, it has just as much value as it did before. You can learn to thrive in the reality you inhabit, but first you have to admit that it’s reality.
Abandoning the fantasy that things are going to go back to however they were before is the first step of figuring out how to live with an illness.
The COVID-19 pandemic is going to end, but that doesn’t mean that COVID is going to go away, or that your life is going to go back to what it was like in 2019. Many governments have shopped the idea that “vaccines will give you your life back” as a way of convincing people to get vaccinated, and while it’s true that vaccines prevent severe disease and death remarkably well, they will not magically make COVID disappear. COVID is present in dozens of animal reservoirs and much of the world remains unvaccinated. As a result, we should expect regular introductions of new COVID variants which may avoid preexisting immunity. Some of these will be mild, but some of them are going to cause severe disease and loss of life.
The rest of your life is going to be lived in a world that experiences periodic COVID outbreaks, and you’re going to have to figure out a way to live in that world. What this looks like is going to be different for different people, but the fundamentals of the pandemic are not going to change all that much going forward, so it’s important to figure out what it looks like to you.
Don’t Let the Illness Dictate Your Life
One of the most dangerous parts of chronic illness is the way that it can become your identity. The illness generates so much uncertainty and fear that it’s tempting to start living your life as though the worst-case scenario has already happened. When I was buying a house I genuinely wondered if I should try to find one without staircases because I was kind of bracing for future mobility problems. Maybe if I didn’t have stairs in my house, it would hurt less if I lost the ability to use them. It’s easy to let an illness destroy your life before it has to. Your goals and aspirations contract, and you give up things that you haven’t lost yet.
It’s easy to let an illness destroy your life before it has to. Your goals and aspirations contract, and you give up things that you haven’t lost yet.
This is a big mistake for two main reasons. First, it won’t make the future less painful. Losing my ability to walk would hurt just as much whether or not there were stairs in my house, and so any energy I spend preparing for that future is a total waste. Since it’s impossible to know what’s going to happen down the road, it’s better to live a full and enjoyable life and trust that you’re going to be able to meet whatever challenges arise. Similarly, in the pandemic context, I might get COVID, I might go to the hospital or develop a second debilitating post-viral illness. Aside from vaccination, there’s not that much that I can do to avoid or prepare for those outcomes, so it doesn’t make sense to try to plan for them.
The second problem with this approach is that it’s extremely bad for your health. Since most MS symptoms are caused by damage to your nervous system, they’re often modified by one’s mental outlook. For example, fatigue, one of the most common MS symptoms, is improved by cognitive behavior therapy. This doesn’t mean that MS fatigue is wholly psychosomatic, but it does mean that one’s mental outlook plays a role.
I had pretty persistent numbness for about three years, and for a while I would mentally note how bad it was on any particular day. What I didn’t realize was that every time I paid attention to the physical sensation of numbness I was actually reinforcing the mental pathways that produced it. Even though the cause of the numbness was a three-centimeter lesion on my spinal cord, the experience of the numbness was modified by what I paid attention to. When I stopped thinking about the illness, my symptoms improved and I was able to do things like exercise, which, over time, led to the numbness going away.
For the past few years I’ve been mostly asymptomatic for MS, but even now if I spend a lot of time thinking about numbness, I’ll begin to feel it. A positive state of mind helps these symptoms both by starting to modify those mental pathways, and also by encouraging good health habits. If you think you have a healthy future you’re more likely to do things like exercise vigorously or take a challenging job which in turn helps create that future.
Many people have spent two years in daily anxiety about COVID. This is not anyone’s fault, but it’s also not healthy. For example, when omicron was first discovered in South Africa, a lot of my friends immediately started bracing for the worst-case scenario. Even though they were vaccinated, they started doing less and worrying more. Looking back on it, they probably aren’t any better prepared now than they would’ve been if they had spent less time thinking about the variant. All that they succeeded in doing was adding a lot of stress to their lives. Similarly, living in fear of contracting COVID probably makes your COVID outcomes worse. Stress and anxiety suppress immune function, and can prevent people from getting the rest that they need to fully recover.
This mental switch is a difficult, ongoing process. If COVID or MS is in your life every day, it’s hard not to obsess over the downside. Every time I get an MRI, or need to plan for a major life event, I go through a period of downside panic. But learning to adjust where your mind is dwelling helps to identify when this is happening, and to at least ask whether or not it’s helpful.
Experience is the Basis of Compassion
I grew up Buddhist, and one of the main challenges that Buddhists face is trying to develop a kind of intuitive compassion for other people. This can be challenging if, like me, you haven’t experienced all that much misfortune in your life. It’s hard to relate to people who are dealing with serious problems if you don’t really know what it’s like to experience similar problems. Without that intuition, all you have is a kind of paper-maché compassion—it looks a bit like the real thing, but it’s weightless.
I remember the very first feeling I had after being diagnosed with MS was an odd kind of gratitude. In that moment I could really understand how hard it is to be a young doctor delivering bad news to a patient; how hard it is to receive that news; and how hard it is to live with the fear and uncertainty that comes from it. While this wasn’t how I felt most of the time over the first few years, whenever I was feeling a lot of fear or despair I tried to tune into that feeling of understanding. I know what it’s like to get a spinal tap. I know what it’s like to not be able to type. I know what it’s like to be denied insurance. While these experiences were awful, each of them were another step on the path of understanding what other people are going through.
Living with MS has, more than anything, helped me support and understand the people around me. Last spring one of my oldest friends was diagnosed with and later died from skin cancer. Early in her illness, we had a conversation about how to handle the diagnostic process. How lonely it can be, and how alienating other people’s reactions can be. Because I had lived through something sort of similar, I was able to help in a way that I probably wouldn’t have been able to do before having an illness like MS.
COVID has provided a lot of these experiences. That feeling of dread you have whenever someone coughs nearby is how people with cystic fibrosis have felt for their whole lives. That feeling of being trapped in your apartment with nowhere safe to go is shared by millions of people with disabilities. That anger you feel at the unvaccinated is what immunocompromised people feel when they learn that their friends didn’t get the flu shot this year. These were all bad experiences, but they can still be useful. Maybe we’ll do a better job of supporting health care workers and vulnerable people in society. Maybe more people will get a flu shot next year. None of us get to choose the bad things that happen in our lives, but we do get to decide what we take from them.
Republished with permission from Gordon Shotwell’s blog.
In this conversation with founding editor Barry Boyce, Frank Ostaseski opens up about the changes he experienced after suffering from a serious stroke and shares how he found strength and refuge in love, compassion, and curiosity.