Send Me More Stories About Chronic Illness
My disease, lupus, primarily affects Black women. So when I walked into my first chronic illness support group meeting, I was the only white person in the room. But no one made me feel like an outlier. A handful of smiling faces welcomed me as I introduced myself, and over the next eight years, we all met together every two months—laughing, venting, exchanging gifts, and commiserating with each other about the common hand we had all been dealt.
My support group friends and I share many struggles: hair loss, fatigue, endless side effects from medication. But while we all suffer from lupus, there are things they deal with with every day that I didn’t know. Not only do they have to deal with chronic illness, my friends have to go out into the world and suffer from systemic racism, too. Once the Black Lives Matter movement took off, I started thinking about how I could do a better job supporting BIPOC.
The key to supporting my Black friends and colleagues isn’t very different from the way I would like to be supported as a chronically ill person.
Then I had an epiphany. The key to supporting my Black friends and colleagues isn’t very different from the way I would like to be supported as a chronically ill person. Ableism and racism go hand-in-hand. And if I want to help make the world better for chronically ill people, I could start by listening, understanding, and believing the experiences of Black and Brown People.
I will never know how it feels to be discriminated against for my skin color. In the same way, the able-bodied people I interact with each day will never feel the exhaustion and pain of my chronic illness. But some friends—the humbler, more curious ones—are better than other. These friends always express interest in how I’m feeling, and actively listen when I describe my experience: whether that’s a day of crushing fatigue, or a bout of brain fog. Most importantly? Because they care about me, they educate themselves about my disease.
So now, I’m trying to do the same thing. To better understand challenges facing Black Americans, I read Black authors. Jesmyn Ward, Gloria Naylor, Percival Everett, Amina Gaultier, Roxane Gay, and Kiese Laymon are some of the amazing writers whose books I’ve enjoyed. Ibram X Keni’s Stamped from the Beginning, Reni Eddo-Lodge’s Why I’m No Longer Talking to White People About Race, and Robin DiAngelo’s White Fragility have helped many people better understand the roots of systemic racism in America.
In the same way I want my friends to believe my experiences as a sick person, supporting my Black friends means believing their experiences with racism.
In the same way I want my friends to believe my experiences as a sick person, supporting my Black friends means believing their experiences with racism. Lupus is an invisible illness, so the exhaustion I feel everyday isn’t seen by the people around me. Likewise, to many white people, racism can seem invisible, because in 2020, it’s not usually Jim Crow laws and bigots in pointy hoods. Instead, systemic racism lurks in the margins, and cloaks itself with plausible deniability. It’s unequal housing opportunities and underfunded schools. It’s the school to prison pipeline and higher maternal mortality rates. It’s unwanted touching of hair and hurtful assumptions by coworkers, strangers, and even friends. And, like my lupus, these symptoms of our society’s systemic racism are very, very real.
Look, I get it. If you’re white, it can be hard to accept that our country was flawed from its creation, or that we as white people have benefitted from the systemic oppression of Black people. I don’t want to believe these things either. But wanting to believe something has nothing to do with whether or not it’s true. How many times have I been told by others that I “don’t look sick”—a simple expression of disbelief that never fails to invalidate my experience as a sick person? I believe Black people’s experiences in a racist society because I know how it feels when my own truth is not believed.
Being an ally to Black Americans takes work, just as it takes work for an able-bodied person to be an ally to the disabled.
I’ve often thought the one thing that would make my life as a sick person easier isn’t more medication: it’s awareness and support from the rest of society. Being an ally to Black Americans takes work, just as it takes work for an able-bodied person to be an ally to the disabled. Supporting our Black friends means always listening and learning. It means being respectful of our different life experiences. Being an ally isn’t always easy — but it’s not nearly as hard as living in a world in which you are judged by the color of your skin.
