Imagining Care For Those With Chronic Illness
October was Breast Cancer Awareness Month. You might not have known that, but I’m guessing you already associate the pink ribbon – or pink itself – with the disease. The two have become inextricably linked.
As ubiquitous as pink ribbons are now, breast cancer was a highly stigmatized disease until the 1970’s when Betty Ford and other well-known women went public about their diagnoses. The pink ribbons first showed up during the 1991 Race for the Cure in New York (Cohen, 2016). Now everything from avocados to car rentals advertise themselves as going “pink for the cure.” In spite of there still being no cure, breast cancer patients have more treatment options, access to information, and support networks than they did 50 years ago.
All of this is good.
And…I wonder what it would be like for us to fully support (and not just be aware of) those with all types of chronic illness.
Ultimately, people living with chronic illness are the experts on how they want to be supported. That being said, here are some things to consider when showing up for chronically ill folks:
Know where you’re coming from: Recognizing our experiences in the medical system helps calibrate how we talk about illness and care with others. Maybe you’ve had mostly positive experiences seeing doctors – that’s great, but it may not be the case for others in your life (especially those with marginalized identities). The reverse of this can also be true: just because you didn’t have positive experiences with a healing modality or speciality doesn’t make that true for everyone.
Unpack your ableism: Ableism is broadly defined as “the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.” (Eisenmenger, 2019). Ableism is baked into our culture, but the more we recognize and correct for it internally, the less likely it is to influence how we interact with our ill friends (and ourselves when we experience illness and disability).
Experiment with care webs: As defined by Leah Lakshmi Piepzna-Samarasinha (2018), care webs are often designed to explicitly break from the model that paid personnel is the only way to access care. Lakshmi Piepzna-Samarasinha emphasizes that these networks – even if they include able-bodied / non-ill people – are “controlled by the needs and desires of the disabled people running them.” When thinking about how to show up for a chronically ill person, you may want to inquire if they have a care web set up. This can look like people who occasionally bring them meals or sit with them when they make a tense call to a provider or insurance company. Whether or not they’re calling it a “care web” or just “friends helping me out,” you can offer to be a part of this network in whatever way makes sense to you. However, like any commitment, it’s important to be mindful about what you can offer and how often. Which brings me to my next point:
Keep showing up when you can, and be explicit when you can’t: As Lakshmi Piepzna-Samarasinha points out, “emergency-response care webs” often spring up amongst groups of non-disabled folks when someone has an acute injury or illness. People flood in to visit, prepare meals, or assist with cleaning. However, after the initial crisis, these efforts often trail off. This may be because the person no longer has the same kind of need, but can also be because these care webs don’t know how to prioritize sustainability the way those organized by disabled folks do. One lesson I take from this is that while emergency response is important, checking in and offering support weeks or months out from an acute incident is just as important. It’s also crucial to be as explicit as possible about your own boundaries and limitations around care work. This will ultimately make it more sustainable in the long run.
Leah Lakshmi Piepzna-Samarasinha’s book Care Work: Dreaming Disability Justice has a great essay on care webs, mutual aid, and how we can imagine a world that doesn’t only focus on awareness and cures when reckoning with chronic illness. I hope one day creative care for the chronically ill and disabled folks will be as abundant as the pink ribbon.
References
Cohen, S. (2016, October 17). This is what breast cancer activism looked like before the pink ribbon. Time. https://time.com/4531239/breast-cancer-activism-history/
Eisenmenger, A. (2019, December 12). Ableism 101. Access Living. https://www.accessliving.org/newsroom/blog/ableism-101/
Lakshmi Piepzna-Samarasinha, L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press.
