I’ve wrestled with what to write here for the past few weeks. I have no expertise or personal experience with the two profound issues we face: living with a novel coronavirus, #Covid-19 and, living with the results of centuries of Racial Injustice, #BlackLivesMatter. No matter what you think about either, it’s hard not to be struck by the large-scale implications of each.
Moment to moment I feel sadness and devastation around each. I am an optimist, though, so I also feel hopeful when someone with expertise talks about the possibility that the tragedies and the losses might spark for real change. Enough said.
Instead, I’ll share my perspective on the topic you came here to read about, and where I have personal experience and some expertise, living and working with #ChronicIllness. No doubt, living with challenging health has shaped my views and responses to both small and big events. And with that in mind, I’ll share the similarities that I see between living with Covid-19, living in a world with Racial Injustice, and living with unpredictably debilitating/disabling chronic illness.
- Living with unpredictability around health is very difficult for some, incapacitating for others, and for some, it causes bad behavior. Good health is fundamental to our capacity to function in the world. For most, good health is a given we rely on — until we can’t. Over the past several months, many all over the world have experienced what happens when this certainty is taken away. It shows us our vulnerability which can be uncomfortable, even intolerable. It taxes our emotional health. It becomes a real problem when this anxiety shows up as negative and destructive behavior toward oneself and others. No matter how you slice it, living with unpredictable is unnerving and can throw even the strongest off balance.
- Talking about your emotional response to your health is acceptable – for now. The message not to talk about health problems, that some things are private, has been replaced by the ongoing chattering about fears. You hear people wondering aloud, “…will I get sick?” or “…now that I’m sick with it, will I get better from this illness?” It’s become commonplace to share your worries and your grief around losing life as you knew it. Worrying about not being able to control your surroundings or your exposure to others is viewed as reasonable. I’m saying a prayer that this continues when we return to ‘normal’.
- We do not all face the unknown the same way. Some focus on what they can do, some stick to solving the problem, some look for solutions. Some refuse to think about the problem regardless of what experts tell them to do. Some have little patience with others, “You’re being silly not to let your child play with mine.” Some judge, “You’re old, you’re vulnerable and it’s selfish to go out when we worry about you.” It’s called Covid shaming, isn’t it? But let’s face it. This isn’t the only space where people are judged for how they respond to health or any difficult challenges, is it?
- We bring who we are in this moment when we face the challenges that show up. If you approach most experiences with anxiety, it’s easy to focus your worry on getting ill. The unpredictable quality – will I get this, how bad would it be, will I recover – becomes a sinkhole. If you’re fairly adaptable, can shift relatively easily toward the new and even the difficult, you’re more likely to find your footing when life turns upside down. It doesn’t matter what the issue is. I’ve found in my own life that noticing how I respond gives me the room to put my energy where it’s most needed.
- It’s a platitude and it is true: Life is not fair. Just ask the “It’s not fair” duo, Bert and Ernie , about fairness. You believe in it until you don’t. Yes, everyone is vulnerable to Covid-19 exposure. But some are more likely than others to contract it, some become sicker than others, and some are more able to get the healthcare they need to prevent it or to heal from it. Some are lucky because their jobs allow them to be safer and more financially secure than others. Some are lucky to have housing where there is enough space to stay safe and, if it’s possible, to work from home. Some are lucky to have enough wealth to weather the bumps. Covid-19 shines a spotlight: Life is not a level playing field.
Please understand. I am not equating the experience of living with chronic illness with being Black or Brown in America. I am wondering, however, if there are lessons we can learn from the experience of Covid-19. Could this be an opportunity to notice what we have in common with others — and where we don’t? Could this be an opportunity to apply that learning to improve both as individuals and the systems that protect us? I don’t know the answers but I do know that I need hope to thrive. Otherwise, I’m just surviving.
How about you?