Though I have been disabled my entire life and have always written about the disabled experience, mine has been an experience with fairly little pain. Muscle spasms are common for me and vary in severity but they have always seemed to me nothing more than uncomfortable and inconvenient. Sure, they hurt some times and occasionally with great intensity but they are 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 especially, these have a history of being terribly intense. So, as I found myself thinking over the discussion of pain I found myself doubled over in my mothers bed with an agony I only remember from the surgeries of my childhood. A day of spastic discomfort which would normally have just slowed me down some 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.”
So with the universe’s permission the following are my five suggestions for finding joy when your body is not working at its best. Whether it is because you are in pain, fighting with fatigue (as is often the case for me) or anything else that puts limits on your body, leaving you feeling less than joyful, I hope these can be of use to you.
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1.Find language that helps you feel understood.
Feeling like your body is not 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.
Language can be the connection that helps us appreciate these different experiences and at least partly, share them. One concept I found helpful in this regard is the spoon theory. Here is a bit of a summary: One friend asks another who has a chronic illness “What does it feel like?” The writer suggests her friend pick up a fist full of spoons. With each task a spoon must be put down. You get dressed, that’s one spoon; you make breakfast, that’s one 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 the following 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 are known to not get along because what I want to do does not 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 is not objectively true.
If you are resting, if you are sleeping, if you are doing whatever you have to do to get your body in its best shape you are in fact doing something, just like eating healthy is doing something or seeing a doctor is doing something.
3. Have a storm chasing partner.
When your body is not working the way you’d like it to, it can be easy to go into hiding. Some times 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. For me who loves the performativity aspect of having company, dressing well, cooking for folks, etc. it was hard for me to let people into my life who were ok if all I could do was hold a conversation or watch a movie. Having done it now though, I can say it is 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.
More Radical Reads: It’s a Nonlinear Process: 10 Tips for Loving Your Body (Disabled or Otherwise)
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 have 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 puled open. Their back id facing the camera as they look outside. Source: Flickr.com/Paval Hadzinski ]