Chronic illness and creativity can be enemies
Chronic illness is a barrier to everything we love and want in life. It can and does keep us from doing many things. Here are five ways it can interfere with creating the things we want and need to create, and a few things you can do to outsmart them.
1. You have to cope with chronic illness. Your list of symptoms might be longer than the average music playlist. Being called a hypochondriac is no fun, but nearly every chronically ill person has been called that at one time or another, and often by their own doctors and family members. If you can’t trust the people who are supposed to be there for you…well, for that matter, even your own body has betrayed you. You’re stuck living in it and sometimes you hate it at the same time. Bring on the resurrection and the new, perfected body!
2. You have to get out of bed even when it’s hard to, and it is hard some days (okay, most days). Your mind tells your body when to go, and your body tells your mind where to go, because your cuerpo isn’t moving, at least for a while.
3. You have to find the time. Your to-do list is too long, and that doesn’t even count the things you want to do. It takes you longer to get things done now, and you just don’t have the energy. You wonder if you’ll ever get around to doing the things you love, because life is full of things you have to do, and there won’t be any energy or time left to get to the things you want to do if you do the “musts” first. The things you love aren’t necessary, you tell yourself. Other things are more important, you reason. So you haven’t done your favorite arts and crafts for years now. So you haven’t written a page in your book in weeks. Or months. Or worse. So what? You tell yourself that you will, soon, but first you have to ___.
4. You have to stop adding to the list of things you want and need to do, even though what you really want to do is whittle down that list and get to something fun. You need to be careful about your commitments. You want to say yes to everyone and everything, but you just can’t. No one can, but you really can’t.
5. You have to predict how you’re going to feel, which is pretty much impossible. You don’t even know if you’re going to be able to dress yourself tomorrow without a little help, much less bake 65 tarts for the charity fundraiser. You definitely don’t have any idea what you’ll be capable of six weeks down the road! People might say you’re hard to nail down about commitments, but you don’t have any other choice. Agreeing to man the kitchen at a potluck isn’t wise because you might not even be able to make it to church that week.
Chronic illness and creativity can go together
So how can you manage to be creative? You already are. You find ways to do so much, even though it doesn’t feel like it. Don’t believe me? Did you keep your kids alive this week? Give yourself 10 points. Did everyone get enough food in their bellies (fasting and abstinence days notwithstanding)? 15 points. Did you wear clothes of some kind? 10 points. Did you change clothes every day? Add 5 points. Is the house still standing, with no new major damage? 10 points. Did medications get taken, and people generally get to where they needed to be? 30 points (that stuff can be hard to keep track of!). Do your family members know that you love them no matter what? 15 points. Did you refrain from being arrested, ticketed, or fined for anything? 5 points. Did you avoid any catastrophes or meltdowns? Give yourself 20 points. Did you help someone outside of your family/home? 30 points and kudos for that one. It’s hard enough to keep up with your own stuff, much less help anybody else, ever, so when you do, bravo.
How’d you do? More than 50 points? Please quit beating yourself up now.
Not only do you use your creativity to cope with your issues and take care of all of those things, but you also find ways to
- sew with arthritis or fibromyalgia or mobility issues
- cook when standing hurts
- stay alive when it seems you’re allergic to everything
- love and care for others, and
- have a sense of humor when it would be understandable to just feel sorry for yourself forever.
You have those reasons not to be creative, but you don’t let them stop you. You just find ways around them. Maybe you work in little blocks. You may make use of apps or other tools and resources. Some days you might lie in bed and write or draw. Perhaps you schedule in time for the things you love, and make everything else wait.
Chronic illness support
If you don’t already have a strong support system in place, please start forming one. I’d be honored to be part of it, to offer some of the help and encouragement you need, whenever possible. People who don’t have chronic illnesses usually find it reasonably easy to find time for the things they enjoy, if not all the time, at least often enough. People who have chronic illnesses, though…it seems a lot harder to do that. It’s really important to have people you feel that you can trust, people who understand. I lived for years with only very few people who even tried to understand. Fortunately, now I have all the people I need. If you don’t, please reach out to me or someone else.
Not once since we met in 1998 has my husband told me that my symptoms are not real or that I must be exaggerating or lying. Plenty of other people have said those things to me, but he hasn’t. What he says is, “You know your situation far better than anyone else can. Do what you need to do to take care of yourself. People need you.” I’m so thankful that he knows that he can’t know what it’s like for me and is accepting and loving like that, and I say the same thing to you: You know your situation far better than anyone else can. Do what you need to do to take care of yourself. People need you.
Sometimes, taking care of yourself means turning off the phone, closing the door, and picking up a paintbrush. Sometimes it means throwing dinner in the oven instead of cooking on top of the stove, and taking that hour to write. Sometimes it means letting the laundry pile up for one more day so you can take advantage of the momentum and be creative for a while. Sometimes it means making an appointment with a Feldenkrais practitioner like Matthew McNatt.
Don’t let the “reasons you can’t have chronic illness AND creativity” get in your way. There are some ways to defy your diagnoses and do good things anyway. What are some you’ve found?