Though I have been disabled my entire life and have always written about disability, mine has been an experience with fairly little pain. Muscle spasms are common for me and vary in severity, but they have always seemed nothing more than uncomfortable and inconvenient. Sure, they hurt sometimes and occasionally with great intensity, but they’re mostly short-lived.
As most cisgender women can tell you, menstruation has also been known to cause a muscle spasm or two. In my family, these have a history of being terribly intense.
So as I found myself thinking about disability and pain one day, I also found myself doubled over in my mother’s bed with an agony I only remember from the surgeries of my childhood. A day of discomfort which normally would have just slowed me down paired itself with my menstrual issues to cause me unusual distress. It was as if my body was saying, “You think you can’t talk about pain? We’ll see about that.”
The following are five suggestions for finding joy when your body isn’t working at its best. Whether it’s because you’re in pain, fighting fatigue (as is often the case for me), or experiencing anything else that limits your body and leaves you feeling less than joyful, I hope these can be of use to you.
1. Find language that helps you feel understood.
Feeling like your body isn’t working the way you’d like can be an isolating experience. All bodies are different, so even the same symptom, be it pain, fatigue, or anything else, can show itself differently from one body to the next.
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One concept I found helpful for better understanding and finding community in experiences of disability is the spoon theory. The spoon theory began when one friend asked another who has a chronic illness, “What does chronic illness feel like?” The chronically ill person suggested her friend pick up a fistful of spoons representing the finite amount of energy they could expend for that day.
Using the analogy behind the spoon theory, with each task, a spoon has to be put down. Getting dressed costs one spoon. Making breakfast costs another spoon. By the end of the day, you’ll find you only have one spoon. Do you use it to make dinner or do you shower? This was the first example I saw of what it was like to live in a body like mine.
Other great resources I’d recommend include Elaine Scarry’s The Body In Pain and videos by John Green.
2. Learn there is no such thing as doing nothing.
Being someone who is low on spoons does not sit comfortably with my wild ambitions. Having a fast-moving mind and a slow-moving body often comes into conflict because what I want to do doesn’t line up with what my body is willing to do.
Busy days, even fun ones, often leave me needing a full day or two to recover and collect new spoons. On tough days I catch myself saying, “I hate sitting around not doing anything.” Thinking about it like that expresses my frustration, but it’s not objectively true.
If you are resting, sleeping, or doing whatever else you have to do to get your body in its best shape, you are in fact doing something. It’s just like how eating healthy is “doing something” or seeing a doctor is doing something.
3. Have a storm-chasing partner.
When your body isn’t working the way you’d like it to, it can be easy to go into hiding. Sometimes we do this to conserve energy, but often I find it’s a matter of shame. We are embarrassed because we didn’t have it in us to pick up around the house or get out of our pajamas.
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For me who loves the performativity aspect of having company, dressing well, cooking for folks, and so on, it was hard for me to let people into my life who were okay if all I could do was hold a conversation or watch a movie. Having done it, though, I can say it’s the best thing I could do for myself. My friends love my big dinner parties, but I always have my husband and one or two special friends who don’t mind riding out the storms with me.
4. Define your day by something else.
When your body isn’t feeling great, it can be easy to think this is simply going to be a bad day. Don’t get me wrong: anyone who tells you “a negative attitude is the only disability” is full of shit.
That being said, there is something to be said for saying a bad day is not the only option.
Maybe today is a day when my legs hurt so I won’t be going out; but maybe it’s also the day I read that book I’ve been meaning to get to. Maybe today is the day I call the friends I’ve missed. Maybe tonight I’ll take a long bath with my husband. Pain is important to acknowledge, but so are all of these things.
5. Find care habits you can enjoy.
I’ve always defined myself as a caregiver. Being a nurturing force for people I care about has always been the best thing about me. I’ve also always needed help with daily tasks. You can imagine these two sides clash sometimes.
For example, I was complaining to another disabled friend about my husband having to dress and undress me to save time. I thought I was making a point about how helpless I was. She didn’t see it that way. Instead she said, “Do you have any idea how sexy that is?”
Needless to say, I enjoy the process much more now.
Not all tasks you need help with will be enjoyable or even comfortable, but if you can spin some of them in a way you can take pleasure in, the rest will be easier to take.
[Feature Image: An individual with long dark brown hair sits in front of a sunny window with the white curtains pulled open. Their back is facing the camera as they look outside. Source: Flickr.com/Paval Hadzinski ]
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