April 29, 2016

Our Experience with Chronic Illness: Tips and Tricks

Written by Olivia Fischer

This piece was co-written and supervised by my partner, J, who has given me full permission to write about her experience.

I am a white, queer, middle-class woman. I am also healthy and able bodied. I am an ex-varsity athlete. I love a woman who is also white, queer and middle-class, but unlike me, she is disabled by chronic illness. I have held her hair back as she vomits from medication side effects, I have driven her to school on her bad days and I have kissed every single part of her face when she is bogged down by pain. Our relationship is changed by this. I wouldn’t have it any other way. Well, no. I would give anything to take her pain away, to relive her of “inward focused eyes” (her way of describing being unable to focus on the world around her, when the world inside of her is a landscape of sharp, white hot pain and deep dull howls).

But I can’t. This is part of her. I don’t love her despite it. This is just who she is.

Our relationship to our bodies is vastly different. I see my body as a tool, as something that has helped me succeed. It is a vehicle of pleasure, of occasional bumps and bruises. Most days, I am in no pain. My body is often something I forget about. J thinks of her body as something separate from herself. She sees it as something she is in constant battle with. Some days, her mouth tightens and her gaze turns inwards. When I ask her where her pain is on a scale of 1-10, she answers and then turns the question around on me. Each time I answer with no pain she is shocked. Just as I have a hard time conceptualizing living in a body that is scarred by pain, she has a hard time remembering that other people don’t feel like she does all the time.

Our society is garbage at dealing with chronic illness. We are awesome at helping someone who breaks their leg, or when they get the flu. We know to show up with soup, to ask if they need help getting to and from work. But when someone is never getting better, we are uncomfortable. We don’t know what to do. Honestly, so much of the time I don’t know what to do. A lot of the time, J doesn’t know what someone could do to help. A lot of the time, J doesn’t want help. She doesn’t want to need help. One of the most valuable questions I have learned to ask is, “how can I make this better for you?”

Being sick looks like making thousands of little choices concerning priorities. What is more important? Leaving the house to hang out with friends or making dinner? Doing homework or having a shower? It means trying to see into the future. Will there be enough energy to make it to the grocery store? When is it okay to push through the pain and tiredness, and when is it not? What are the consequences to this action? If you’re able-bodied, when you get home from work or school, you might not want to make dinner, but you’re probably able to. You don’t have to decide between dinner and the laundry or dinner and homework. J has to decide what is more important all the time. She makes lots of little decisions that never occurred to me before getting more and more enmeshed in her life.

This is not an essay about how I am a hero and savior for standing by her while she deals with her day to day. I’m not. (That’s ableism, yo!). This is also not an essay about how I feel about seeing someone I love struggling (which is terrible, by the way. It breaks my heart all the time). This is an essay about the ways we subtly reinforce ableism and how we can support people in our lives with chronic illness and disability. These are some tips my partner and I have come up with through trial and error.

One of the most valuable questions I have learned to ask is this: “My understanding is that sick people move through the world in a different way. Is there anything I can do to be supportive of that?”

  • Don’t assume that illness or disability looks a certain way. On J’s worst days, she often looks like a turbo babe. She uses clothing and makeup as armor. When you feel horrible every day, the act of dressing is always a challenge. She once said to me, “if I wear sweatpants every time I felt sick, I would wear sweatpants every single day.”
  • Think about how you can make your friendships more accessible. This can look different for everyone, but some awesome things are: being accepting of cancelling or changing plans on short notice. It’s not about you; it’s about their health or their body.
  • If your sick friend suggests hanging out at their house, don’t assume that just because they’re feeling crummy, they’re “too sick to hangout”. They’re just changing the venue of the hangout. If they are sensitive to smells, try being scent-reduced. It’s a super easy way to be more accessible for a lot of people. Don’t use scented shampoo or scented laundry detergent. For folks with chemical sensitivities, those products are a mine-field.
  • Don’t question them if they say they can do something. You don’t know what is best for them or what they’re capable of.
  • Is it possible to combine chores and hangouts? J sometimes doesn’t have the energy to hangout with people AND make dinner. Can you go grocery shopping with your sick friend? Can you do errands together?
  • Ask questions about their experience. Don’t always put the onus on them to bring up how they’re doing or what they might need or want. Recognize your privilege and don’t question their experience or needs. Recognize that “that time you broke your foot” is not the same as living with a chronic illness or disability.
  • For lots of folks, they are never getting better. The need for help and support never ends. Don’t bring your feelings about this to them. J knows she is never getting better, and supporting people in her life who have feelings about this is a burden for her. Just like you shouldn’t bring your white guilt to one of your POC friends, don’t bring your able-bodied sadness to someone who is living with something that will never go away.
  • Your friends with disability and illness are stronger than you will ever realize. They get up every day and fight battles with their bodies to live in a world that doesn’t support them or validate their experience. Recognize their strength and validate their experience.

One thought on "Our Experience with Chronic Illness: Tips and Tricks"

  1. jennie says:

    I appreciate this piece, thank you for writing it. i think there are lot of solid examples here about supporting someone with chronic illness. I particularly appreciate the broadening of “accessibility” into friendships that include canceling plans etc. Access is so often put in a box that limits its meaning and application. I’m also disabled by chronic illness so i’m coming at this from that point of view/experience.

    Here are some thoughts:

    -I would have loved to see a short definition of ableism for readers unfamiliar with the term or as i have learned, who throw the term around without understanding what it means.

    -I prefer when “able-bodied” is presented as a spectrum rather than a binary. What people chronic illness can and can’t do (their “able” bodied-ness) can be drastically different from illness to illness and from day to day. It’s also really impacted by social/community supports, mental health, class etc. For example, although symptom severity limits me, i am ambulatory, i feed and dress myself, i make meals, I drive a car. Am i able bodied? Am i disabled? Where does “able bodied” end and “disabled” begin?

    -The point about able-bodied sadness. I get that not everyone wants to/can deal with the sadness of their friends and I get than not all relationships are healthy enough or safe enough for what i’m talking about but I don’t think comparing it to white guilt is useful. My family and friends are sad it’s true and for the most part they try really hard to hide it from me. To be strong for me. To pretend it doesn’t affect them, that they don’t cry when we get off the phone sometimes. That they never feel overwhelmed. I agree that they need to talk/process/work it out with other people but I have also found it incredibly liberating to allow a bit of space in my relationships for people who love and support me to express their sadness–not so i can make it better, not so i can fix it or work on it with them, just to be there with them and connect with them as we feel sad together. Because this shit is hard and i want to feel that people are affected, that they are hurting too, it helps me feel less alone. This is why comparing it to white guilt is not useful. White people feel guilt because of racism and white supremacy, not because they are loving POC and sharing in the pain POC feel because of racism and white supremacy. White guilt is about the white person, never about the POC. Able-bodied sadness can for sure be about the able-bodied person but it is often about the sick person and a little space to cry or rage together can be an amazing way to stay connected and share a bit of my exp with someone who doesn’t relate.

    anyways, i’m stopping here!
    thanks again for a great piece!

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