Chronic Illness Changed How I Recreate
What to do when you can’t be active in the same way
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I am a very active person and competitive mountain biker—or maybe I should say that I was a very active person. Six months ago I caught COVID, and though my symptoms were mild at the time, I have not fully recovered. On a given day, I can only do about half of what I used to be able to do, and that level has been steady for about four months now. Some days I feel almost normal, and some days I can barely get out of bed. I’m trying not to give up hope, but at the same time it’s incredibly discouraging. When I remember the things I used to do, it’s like I am remembering the life of another person, who was amazing and nothing like who I am now.
It’s also hard because my friends are talking like the pandemic is over. It’s like the pandemic is over for them, but not for me. Even once I get fully vaccinated, I can’t imagine not worrying about contracting COVID again, or one of the newer variants, at least in crowded places with a lot of people. It just feels like my body can’t handle another illness. Even the flu would be hard on me right now. My friends say the right things, but I also have the sense that they don’t really believe me, or they think I’m just depressed and that once life gets back to normal I’ll feel better. I’m trying to hold onto hope that I’ll get better soon, but I’m afraid I’m lying to myself. I know you’ve written about having lyme disease, and I was wondering if you have any advice for coping.
Healthy, able-bodied people tend to have a natural understanding of illness as something that comes and then goes. You get sick, it sucks, and then you feel better. If you have a chronic illness—and there’s so little we know about long haul COVID, but I’m going here by the definition of chronic as lasting three months or more, which applies to your situation—then it’s natural to feel better, worse, better, worse, and so on. When you’re used to expecting recovery to be linear, then each time you feel worse after feeling better, it can be devastating. Not just because you’re having a shitty day (or week, or month) but because it shatters the hope you’re clinging to, which is that being sick means it’s only a matter of time before you’re well again, and the only way to go from the bottom is up.
Years ago, when I still thought of my health as a fixed and impervious thing, I went to a talk by disabled poet and activist Eli Clare, where he said something that has always stuck with me. He referred to non-disabled people not as able-bodied but as “temporarily able-bodied.” The idea of a clear division between the sick and the healthy is a myth that the healthy use to reassure themselves. After all, if we’re lucky to live long enough, we all acquire injuries and illnesses, though we often do our best not to think of them ahead of time; and even the most active 90-year-old would seem limited by the standards of most twentysomethings. I suspect that’s why you’re sensing disbelief from your friends, who are probably comforted by the idea that you are or were, as you mentioned, a highly active and athletic person. “I don’t believe this is happening to you” is another way of thinking “I don’t believe that could ever happen to me.”
Putting aside the questions of when, if, and how you’ll get better—and however your body functions, I hope that you’ll feel better soon, and gain the support and comfort that you need—it might be helpful to recalibrate your expectations for your daily life in the context of your current health, if you haven’t done so already. What does a good day look like right now, and how can you reshape your life to make more of your days like that? In what ways are you still trying to do more than you’re reliably capable of? Are there certain goals you can let go of, or at least set aside for a while? Can you schedule recovery time after you do something big? What are the ways that outside help could ease your burden? (Or course, I know it’s not that simple; we have a society that is in many ways designed not to help people who are disabled or in health crisis. You can’t change outside pressures, at least not immediately, but you might be able to change your own.)
By adjusting your expectations for yourself, you’re not “giving up;” you’re putting realistic systems in place so that you’re able to exist as well as possible in your current body. In a society that celebrates a specific type of productivity, that alone is radical. When your health and abilities evolve—as they will—you can re-evaluate your expectations. In fact, you may find yourself regularly re-evaluating. Keep in mind that the definition of success that matters is the one that best serves you. It can, and will, change with time.
Some of your friends may never get what you’re going through. But a thoughtful person—and a good friend—shouldn’t need to get something to believe it. It might be worth writing your close friends a letter to lay out the things you wish they understood, and/or the ways they can support you, which will also give you a chance to articulate those things to yourself. How would you be comfortable socializing? Are you up for backyard hangouts in the warm summer months? Going for walks together, if you’re able? What if you both wear masks, at least until we get closer to herd immunity? Not all your friends will be up for it (and the ones who don’t believe you are probably guided by fear and denial, which isn’t exactly comforting, but at least you’ll know it isn’t personal). But some of them will be, and a few of your friendships may even get stronger.
A word about how your memories seem like memories of another person, another life. You’ve been a competitive mountain biker, which means you’re tough and persistent and brave, and probably a whole lot of other great things, because mountain biking seems completely wild to me and I have tremendous respect for anyone who tries it (let alone enjoys it). Whether or not you race again, those traits will always serve you. You were tough and persistent and brave in a highly athletic body, and now you’re tough and persistent and brave in a body that’s more limited, and however you feel in the future, I have no doubt that you’ll be tough and persistent and brave then, too. It’s not our abilities that define us, but our characters, which is how I know that your amazingness isn’t past tense. It doesn’t lie in what you did, what you could and can do. It’s still there, I promise. It’s you.