Reciprocal. 50/50. Equal. You name it, chronic illness changes it. So many folks I know with chronic illnesses doubt what they have to offer in relationships when they can’t “pull their own weight.” I face this shame in mainstream circles, in queer counter-cultures, and battle against internalizing it. We need a new way to frame give and take in committed relationships that’s not alienating for folks with chronic illness.
Before I got sick my wife and I were division of labour superstars. We had this whole
morning routine where I would begin prepping smoothies and coffee while she showered and she would finish making breakfast while I showered and then we’d both sit down to eat together. Now I am in mind-numbing pain if I don’t get way more sleep than an adult who is well would ever need. I wake up groggy, fatigued, and nauseous but still need to organize over 60 meds for my day (naturopathic, homeopathic, and allopathic– it takes everything with Lyme). Doing yoga first thing will significantly reduce my pain. Would I be able to eat, let alone make breakfast, in the midst of this? Not bloody likely. But my wife leaves me a nutrient-rich, protein-filled, anti-inflammatory smoothie every morning. She does more than half the chores now. She makes dinner more often than not. She runs more errands.
I’ve had a lot of angst about it. It was, and continues to be, hard not to see myself as a drain on her energy and feel bad about the multiplicity of costs my illness requires. Comments people made can illuminate myths that add to the difficulty I faced. Here are just a couple of examples:
Comment: “Poor Colleen! She does too much.”
Myth: Partners of people with chronic illnesses should be pitied.
If you think we had too much on our plates, you’re right! Folks saying “poor Colleen” weren’t offering to come help us with dishes or pick up some meds from the pharmacy, they were just talking about her with a sense of pity. This, of course, didn’t help either of us and just made it harder for me to not feel like a burden. At one point I got sassy and started answering “how is Colleen,” when asked with a pitying tone with “well, she married her soulmate this year so that’s pretty damn great!”
Comment: “Oh wow, so then you were supporting her !”
Myth: People with Chronic Illnesses Don’t give Support.
My wife is steadfast and routine oriented. My personality (illness notwithstanding) is such that I’m generally up for a spontaneous adventure. One time we had camping plans go awry: the campground on the island we’d just sailed to was closed for the season. I got us back to the ferry terminal where there was a connecting sailing to another island. I pushed us to switch gears quickly and while it stressed her out at first, she was then relieved and happy that we had a lovely place to go. I know her well and know when this will be okay. When I recounted this story to a friend, she said, “Oh wow, so then you were supporting her !” Hey folks, this sentiment rests on seeing folks with disabilities as sponges who take but do not give. That’s a myth.
To counter this, my wife and I brainstormed ways that I support her that are not based on mobility and energy. Here’s a partial list:
- I hold her hand when she is sad
- I snuggle with her every night
- I listen to her process work and life stress
- I inspire us to meditate together
- I have creative ideas for low-energy dates
- I am reassuring through upheaval
- I’m a problem-solver, able to coach us toward solutions
- I am a silly-head and make her laugh by being my weirdo self
I have a PhD in Gender Studies and do not want to perpetuate unequal partnerships. Don’t get me wrong, I’m not advocating that folks let themselves off the hook and hang out playing video games while their partner makes them dinner if they could get up and help out. I’m not excusing the person who has a drink with their buddies while their spouse does more than their share of the housework.
I’m talking about replacing the notion of 50/50 with something else: that everyone in a household does 100% of what they can do. When I was at my most sick, 100% of what I could do was to have help getting to the bathroom and back or sitting up so that I could eat food that was brought to me. I still do 100% of what I am able to do and so does my wife. And guess what? Our relationship is still mutually-supportive regardless of dish-washing count.
I encourage you to reframe “giving” from transactional scales to wholehearted engagement.