For those of us who live with chronic illness or are otherwise physically disabled, the language used in much of the discourse about self-care and improvement can be alienating. We know that our able-bodied friends love us, and just want us to be our best selves and live our best lives, but sometimes the way that they go about facilitating that can actually be harmful to us. The key to be a supportive ally and friend is to listen, communicate, and accept the boundaries we put in place to protect ourselves. Here are just a few tips to keep in mind to make these talks more welcoming and less ableist!
Try Not to Moralize Physical Health.
This is something you see a lot, and it is so ingrained in our thinking that it’s difficult to separate out; there is a strong implication that neglecting your health is an ethical failure. Not only is this just a fundamentally flawed worldview, as no one owes you or anyone else a certain degree of “health,” but for your differently abled friends, this type of thinking can serve as a real barrier and also a painful reminder that while other people may have control over their physical health, we do not. As much as we wish that a wholesome diet, regular exercise, and fresh air could make our bodies feel as strong and clear as yours might, ours do not operate that way, and often, exercise and outdoor activities are dangerous for us. (I should note that I absolutely believe that these are all wonderful and important things, but they are simply not always accessible options for the chronically ill.) Be Mindful of The Activities You Invite Friends To.
As much as we may want to go to that concert, or museum, or bar, or wilderness retreat, those things may not be realistic for us. Places with large crowds, loud music, lots of walking, or even a long car ride can be insurmountable issues. Consider the types of events you’re asking your friends to come along to, and factor in the climate! Too much heat or cold can be difficult, as well as going most anywhere during flu season. On that note, don’t invite your friends to hang out with you if you’re sick, even acutely! What may be a small cold for you could turn into pneumonia and an extremely expensive hospital visit for us. And as a footnote, Yoga in particular is incredible and great, but not an option for everyone. Price, leaving the house, being in a public space, and being around others while immunocompromised can be very real dangers for our bodies. It can also be embarrassing to be unable to hold poses due to pain or mobility issues, especially if at first glance you look able bodied.
If You Are Planning A Beauty Related Outing, Or Giving A Gift, Ask About Sensitivities!
Check in with your buddies and ask if they have any chemical/scent sensitives! Some of us have reactions to things like makeup, perfume, bath bombs, scented candles, essential oils or incense. They can trigger allergic reactions or migraines, and this can even include products YOU are using, like hair or body spray. This also extends to certain cleaning products, so (as with everything else on this list) open communication is key. Be Open to Listening to The Experiences of Your Chronically Ill Friends, Instead of Offering Solutions.
This one is really difficult! It’s hard to push down the instinct we have to help, especially when we have an idea that we think may make our friends lives easier, but if your friend is resistant or seems dismissive to your suggestion, consider that nearly every person we interact with has a cure, a fix, or solution for us. After hearing so many different takes on how to heal ourselves, most of which we have already tried, it can become disheartening, and almost condescending. We know that you’re just expressing your love and care, but sometimes we are worn down from the daily fight. Sometimes we don’t want to think about our illness! Sometimes we just do not have the emotional energy to hear one more rendition of “I know you’ve tried this protocol, but you haven’t done it with THIS $80 supplement I saw at Sprouts!” (We have tried it with the $80 supplement you saw at Sprouts.)
Be Careful About Supportive Language and Common Platitudes Like “It Will Get Better!” or “Feel Better Soon!”
This is another difficult one, because we know you’re just trying to be motivating, but there are times when hearing “Get Well Soon!” is crushing. The reality is that often, we will not get well, and will not get better. We have to live in these ill bodies for the rest of our lives, and while we understand that for able bodied, healthy friends it can be almost impossible to conceptualize being sick and in pain every day, we have to exist this way. The things that you may find comfort in while you are sick with something like the flu, (IE; “It won’t always be like this!” “I can’t wait to get over this!”) are just reminders that for us, that is not the case. Looking at a future that is forever painted by chronic illness and disability can sometimes be incredibly bleak, even when we know that it’s coming from a hopeful place on your part. Additionally, please try to refrain from making statements along the lines of “Medicine changes so fast! Don’t give up hope!” While we know that is true, banking our future and lives on a change that may or may not happen, may or may not be accessible to us, and that we may or may not live long enough to see happen, is really, really hard. We have had to accept the reality of our limitations and imagining a future in which they do not exist or can be treated medically is often unhelpful and impractical. Instead, consider saying things like “How can I help?” or offering to pick up prescriptions, bring food over, or hospital visits! Your friends will be able to communicate what they need from you to you, so trust them to let you know how you can help them fight!
Maya Elena Jackson is a female author and musician hailing from the Sonoran Desert. Her writing has most recently appeared in the third issue of OUT/CAST, in the Pen 2 Paper Creative Writing Contest, and was selected as one of the winners of the Hotel Congress 100 Year Anniversary Celebration.You can hear her spoken word pieces on her local Tucson, Arizona radio station KXCI, and catch her resting in the hot desert sun, most likely with her pets.