The Labor of Being in Community with a Chronic Illness
In everyday life, community, or rather knowing where to find community, can be something we take for granted (on the surface). In the United States, you know where the black cities are, which black cities have young black people, and which black cities have an excess of young black professionals. If you are a dog-lover, you know to look for dog-parks, dog-training classes, or other dog-centered events. But if you are a person with a invisible chronic illness, it is not always readily apparent where you can find community that will love, support, affirm, and understand your experience. Even here in NYC, as a black person with a invisible chronic illness, I have not found communities filled with other people like me. As a result, most of my social and emotional labor has been spent trying to educate the able-bodied people in the communities that I inhabit, how to understand, or even empathize with daily life in my disabled body.
As I’ve noted before, capitalism has taught folks in the U.S. to idealize productivity. Our culture is one that assess character based on the movement of our material bodies. We constantly use our workout schedules, diet adherence, or lack of sleep as measuring sticks of how good/valuable/disciplined we are. As such, time and time again, when I’ve entered new communities and disclosed my disability, I’ve consistently been met with disbelief. I’ve been accused of being lazy, individuals have assumed that I simply needed to be “pushed,” and/or the assumption has been made that I lacked proper motivation. Rarely have I notified able-bodied people of the accommodations that I needed and been believed.
It is no wonder then that most of the people I know with chronic illness rarely choose to spend what little energy they have in new communities. After all, most of us have to convince our families, friends, mentors, and partners’ to respect and honor what our bodies need and require. Who could blame them for not wanting to spend years convincing a new group of people that our chronic illness is not simply a character flaw or a shortcoming?
For people like me that live away from the place that I grew up, are single, or are socially isolated for any number of other reasons, sometimes entering new communities becomes necessary. But no matter how many times I have to undergo the work of disclosure, unfortunately it [almost] never stops being painful, hurtful, and disappointing. Ultimately, I’m not sure what it would take to get people to see value in disabled bodies. I do know that the emotional labor it takes to constantly explain, over, and over again the nature of invisible chronic illness drains me in a way that is hard to describe.
- Every time I have to explain that some days even speaking out loud, is to much to bear when my entire body is in pain.
- Every time that I have to remind a community member that if I overdo it today in an effort to meet their needs, I may not be able to meet my own needs later in the week.
- Every time someone infers that I am simply dramatic, a hypochondriac, or generally just an asshole, when I am actually trying to manage near constant pain.
- Every time someone tells me of a new diet, to become vegan, to drink green juice, a exercise program, herbs, or a positive thinking mantra as the thing that will cure my chronic illness.
- Every time someone takes my need to rest as a personal affront.
- Every time I have to explain to someone why constantly doing the labor that the above list infers only adds to the psycho-emotional-physical pain of my chronic illness.
- Every time the same person behaves in the ways listed above, repeatedly.
- Every time someone tells me that positive thinking will improve my illness.
- Every time someone tells me that I should smile more, be friendlier, or generally do extraneous work in order to make them more comfortable with my experience of constant chronic pain.
- Every time a million other things happen that I am to tired to list right now.
My hope is, that by continuing to talk about/write/describe my experience as a disabled person, it will make folks more aware of behaviors that they assume are helpful, or at least benign. Similar to any other -ism, even the most innocent seeming hurts can become traumatic if they are repeated enough times by enough people. At the end of the day, similar to consent, it is our individual responsibily to just believe people when they set boundaries or limits for their bodies. You never know how much it may mean to someone when you believe what they tell you about their disability the first time.
peace.
a
Alex Moffett-Bateau / Prof MB (she/they) holds a PhD in political science from the University of Chicago and BA in political science + African American Studies from the University of Michigan. She is an assistant professor of political science at the City University of New York. Their research and writing focus on extra-systemic and subversive politics. Her manuscript in progress argues, in order to accurately understand the political engagement of Black women living in poverty, a fundamental expansion and redefinition of what is considered, “political” is needed. Prof MB is a public speaker, consultant, and podcaster. She is a political knowledge worker whose focus is on Black feminist + disability justice political education. Prof MB is originally from Detroit and now makes her home in New York City.
Thank you so much for this article.
I too was a part of a community in which the members were no where near empathetic/sympathetic/understanding of my needs and emotions. Though my condition was not chronic, and spanned approximately two years, it was two years in emotional hell–I became more of a recluse, and developed insecurities, and resentment towards several community members–all things that are pretty much defeating the purpose of being in community. Although my ordeal was approximately two years ago, I still deal with the trauma, have lingering insecurities, and to top it off, I’m often dismissed and told to go seek therapy (which I’m not opposed to but I’d much rather be heard by those whom I believe offended me during the two years).
One thing that I do wish that I was able to do during my two year condition, was to be more of an advocate for myself and vocalize answers to those uncomfortable questions. Every time I would try to do this, I was not met with friendly faces and open arms so I quit, I stopped talking about my condition, I stopped trying to get people to ‘believe’. I let others set the parameters for what I was and was not able to do. Although my ordeal helped to shape the course of our community in a positive way, it was done so at an emotional cost… at my emotional cost.
Great, after reading two paragraphs, I haven’t given you an answer nor clues to help you deal with your community. All I can truly offer is, be true to yourself, honor your body, as you know it best. But be sure to keep others included, be open, be patient. These ‘healthy’ people have lots to learn, and who would be a better teacher?! I know it’s painful, and this is of course at your emotional cost, but your community will benefit immensely from your experiences. You are paving a way for those who will come after you. This battle is not just for you, although it definitely feels like it right now. This battle is really for those in your shadow, those unable to speak for themselves. You’re changing the face of your community, in an immeasurable way, as we speak/lament:)
Keep up the great work!
I see you;)
–Alex