What have you learned from self-care? 

Chron­ic ill­ness is not a bar­ri­er to stand­ing up for justice

5 minute read
Not everyone can join this crowd. (Photo by Alaina Johns.)
Not everyone can join this crowd. (Photo by Alaina Johns.)

I never know when the overdraft is coming, but when it hits, I’m never surprised. If I could track it like the dollars in my checking account, life would be easier. I would know when to act and when to rest, when to march and when to nap, when to work late and when to try again tomorrow. Living within the limits of a chronic illness can feel especially paralyzing in times like this, but for white folks like me, health problems are not an excuse to opt out. This challenge may even add insight to anti-racist work.

As we entered the second week of protests following George Floyd’s killing by Minneapolis police, I felt myself sinking. I have a mood disorder as well as chronic physical illnesses, and sometimes, if I’m lucky, I’ll go a few months without a severe episode. But in a city roiling with vital protests, where every moment throbs with sirens and helicopters and the news seems like an unending procession of tragedies, it’s harder to stay upright.

It feels like an outgoing tide. It’s more than sadness, fog, or a storm of suicidality. It’s like my limbs turn to iron and my mattress is a magnet. Sometimes, I can join a protest. Other days, I can barely sit up.

The challenges

If you have a chronic illness, you don’t get an extra ration of energy even when you desperately want it—like when the country is on fire for justice and you need to stand up for Black lives. Protests, rallies, and other public actions are the most visible parts of a movement for justice; fortunately, they’re not the only way to participate.

Some folks can’t be on their feet all day. Some medical conditions rule out activities where bathrooms aren’t easily available. And it should go without saying, in a pandemic, that some people can’t risk exposure (for themselves for their loved ones) by joining a march.

Some people experience serious anxiety, distress, or sensory overwhelm in large, noisy crowds. Some people, like me, experience debilitating mood cycles that are triggered by overexertion, conflict, or intense, potentially violent scenes.

Similar trouble can extend to less visible actions. People who struggle with anxiety may fear picking up the phone to demand arrests or legislative action. People whose symptoms of depression flare in response to interpersonal tension may avoid taking on family members who are wittingly or unwittingly complicit in racism.

But these challenges don’t determine your ability to get involved.

Finding resilience

If you have chronic illness (especially a mood disorder), you already know what it’s like to be frequently confused, uncomfortable, or mentally and emotionally bruised. You know what it’s like to observe and adapt to each new day. That’s the kind of endurance you can apply to other things as well.

If you benefit from white privilege, like I do, and you’re stepping up to combat it, you’ll be wading through feelings and actions that are difficult at first. If we can’t live with discomfort, if we can’t consistently be vulnerable enough to internalize challenging new paradigms, we’ll never progress in our own work to end our complicity in racism.

Instead of telling ourselves we don’t have the spoons to engage in this discourse and some version of action, can we trust the resilience we’ve already learned, and see it as a source of extra strength for anti-racist study and action?

There are endless ways to say it in your own life. (Photo by Alaina Johns.)
There are endless ways to say it in your own life. (Photo by Alaina Johns.)

A cumulative effect

This movement won’t end with a summer of protests. The long-term work will be quieter and less visible than sign-waving masses. Progress will depend on whether a critical mass of people stay committed to sustainable actions behind the scenes. And who is likely to understand how to take small, consistent, intentional actions in everyday life—not because they come with a reward or social capital, but because they’re necessary? People living with chronic illness, that’s who.

We know the cumulative effect of small positive actions on our ability to function at large (and the damage of failing to follow a maintenance plan). Eat the right foods. Take your meds. Recognize when you need to rest. Avoid activities that trigger your symptoms. Communicate your needs to the people around you.

Can you build on the consistency of that routine, channeling empathy beyond your own experience and adapting your kickass self-care skills to new practices outside yourself—practices that add up in the big picture? For example, dedicate time each day or week to educate yourself. Call or email your reps and help your friends do the same. Spread information in your community. Give supplies or support to activists on the front line. Make an ongoing series of small donations (or large ones), if you have the means. Do your research and vote in every election. And invest your everyday commerce in the communitities that need it most.

Beyond our health

Chronic illness is a massive personal challenge—but having one is not comparable to experiencing racism. And people with chronic illness exist in a full range of intersecting identities (for example, white people living with a mood disorder, like me, do not also experience racism, like Black people with the same diagnosis do).

White folks living with chronic illness may face extra challenges in this process, but we can also focus on the ways we’re poised to participate in the movement, especially in critical quiet moments that don’t make the news. Find the power you can sustainably wield in yourself, and while you commit to keeping yourself healthy, leverage those habits to commit to justice for others, too.

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