Anyone who has ever dealt with chronic illness is probably sick of hearing about non disabled people “finding a new normal” in a post-COVID world. We’ve been trying to find our new normal since COVID hit (and seriously, what is “post-COVID”? That doesn’t exist for high-risk individuals). In truth, many of us have been trying to find our new normal — new ways to live our daily lives, to connect with friends and family, to have fun — for much longer.
The day we get sick is the day everything changes. Diagnosed or not, chronic illness completely changes our lives, sometimes sporadically in flares and sometimes in totality. It can leave a void of hobbies, love and even fun.
However, even if we can’t do what we did before, it’s critical that we find new things to keep us motivated and entertained. It feels awful to not be able to do what we love. You may find yourself asking, “What else can this disease take from me?” And that’s valid. But if we stay stuck on what we can’t do for too long, we can hurt our mental health.
Related: Mental Health Resources for Lupus Patients
Sometimes the very act of trying to figure out what we can do is overwhelming — it takes a lot of energy to brainstorm, devote yourself to something new and acknowledge that a change needs to happen. You don’t have to do it all at once. When you do, you can break the task down into simpler steps to make it a bit easier.
Step 1: Make a list of what you used to love but now struggle with, and why.
The first step is always the hardest. Taking an honest look at where you are is difficult but necessary. For this exercise, you’ll want to focus only on items of passion, not work. We’re not thinking things like, “I used to be able to stand eight hours a day for work, and now I can’t even stand for one.” We’re thinking about things like:
- “I miss being able to run every morning; now I can’t even run at all because of my neuropathy, muscle pain or weakness.”
- “I used to love to knit, but now doing it for even a few minutes causes me intense hand swelling and pain.”
- “I used to love cooking delicious dinners every night, and now I can’t make anything besides frozen food because my body doesn’t cooperate for long enough.”
If you find yourself getting upset, that’s okay. Keep going. Talk it out with yourself. Why are you upset about this? Figuring out why you’re upset helps to inform how you can move forward.
Related: Grieving our Pre-Chronic Illness Lives
For example, one of the things I struggle with most is neurocognitive deficiency (“brain fog” due to a head injury), which is a doctor’s way of saying my brain doesn’t work as well as it used to, particularly in areas related to language. This is difficult for me because I’m an academic writer and editor. Feeling words right on the tip of my brain’s tongue but never quite being able to reach them is a special kind of hell, and it means that I can’t perform at the level I once did.
Step 2: Make a list of what you’ve always loved but never had the time to do, and why.
Once you have your list scrawled or typed or sobbed out, it’s time to have a little more fun. Now, we’re going to make a second list, a list of the things we’ve always wanted to do but never had the time to because we were so inundated with the things we had to do. It’s okay if these things are still outside of your limitations or completely off-the-wall pipe dreams; the important part of this exercise is that we start to identify our passions. It can help to think about your childhood dreams. We’re thinking about things like:
- “I used to dream about being a star athlete, but work and life got in the way.”
- “I always wanted to work in the fashion industry, but I never had the right connections or the time to practice.”
- “I wished I could open my own restaurant, but it always felt silly and unsustainable, so I did something else instead.”
Related: Managing Life With Lupus by Focusing on What I Can Control
For me, the thing I’ve always loved but never followed through with is creative writing. Creative writing is often seen as a thankless task — there’s very little money in it so it’s not conducive to supporting yourself or a family, and work is sporadic so there’s an inherent lack of stability. As we grow up, many of us quantify our passions by how financially gainful they are out of necessity. Now that we are sick, we need to unlearn this mentality; passions can be mentally gainful, and therefore beneficial.
Step 3: Find the overlap between what you’re upset you can’t do and what you love.
Once you have your lists, take a holistic look at them. What do these items have in common? You can group them however you see fit; I like to do so in broad categories and then narrow them down. Using the examples above, we might say:
- Fitness – using my body; feeling accomplished
- Art – creating something new; sharing my work with others
- Cooking – crafting something with my hands; being able to enjoy my creations
Related: Chronic Illness and the Journey to Acceptance
In looking at my own list, I determined that although my chronic illness had taken my ability to work efficiently with high-level medical or academic texts, my true passion was always in crafting informed pieces, working with authors to make their stories better and helping others to share their work with the world.
Step 4: Turn that overlap into something positive.
Now that you have these, it’s time to do some research. A helpful starting point can be to Google things like “disability fitness,” “chronic illness art” or “cooking when disabled.” Essentially, you pair the category with a term related to chronic illness. You’ll find activities, organizations and communities to become involved with, many of which are free or low-cost. The first one you find may not be the perfect fit; if it’s not, keep looking. Meetup.com, Facebook events, and similar sites can also be great resources for virtual events. Become invested and engaged. You may find things you never thought of. Here are some examples to get you started:
Fitness with Chronic Illness
- Activities: Seated martial arts, seated archery, stationary biking, aquatics
- MoveUnited: Comprehensive suggestions for accessible sports and where to become involved.
- Challenged Athletes: A listing of adaptive sport organizations by state.
- NCHPAD: Videos and articles about disability fitness.
- Accessibility Tools: HealthPedal, BerkelBike
Art with Chronic Illness
- Activities: Rock painting, accessible fashion, fiber arts, digital art
- Runway of Dreams: Programs, events, clubs and internships around accessible fashion.
- Disability Arts Online. A disability-led online art community.
- Spoonie Theater: Virtual, inclusive theater productions.
- Accessibility Tools: Loom Knitting, Talk Typer
Cooking with Chronic Illness
- Activities: Seated cooking or baking, dietary restriction recipes
- Disabled Kitchen & Garden: Kitchen and garden tips and tricks for disabled people, written by someone who is disabled.
- Adaptive Chef: A collection of free visual recipes and other resources.
- The Disability Network: Virtual adaptive cooking classes and other opportunities.
- Accessibility Tools: Adaptive cooking tools, visual recipe creator
I determined that what would make me feel best was investing myself in creative writing about disability. I wanted to use my publishing experience to help bring honest stories of disability to public attention. I couldn’t find anything that worked directly with this mission, so I created my own small press for chronically ill, disabled and neurodiverse artists and authors: Spoonie Press. Had I never gotten sick, I would never have found the joy of working with such amazing people and content. That doesn’t mean I’m grateful I got sick, but it’s an acknowledgement of the fulfillment I’ve found because of chronic illness. It can be scary to take the leap, to leave behind the “I-want-to-do-what-I-used-to-do,” but it’s exciting, too. What will your passion be?
Sara Watkins nor LupusChick are affiliated with or endorse the websites linked on this page and are not responsible for their content.
Sara Watkins (she/her) is an editor, author, UCTD-haver and editor-in-chief of Spoonie Press, which is devoted to publishing work by chronically ill, disabled and neurodivergent creators. She is the winner of the 2022 MASKS Literary Magazine Story Award. Recent publications include work in Wordgathering, Vast Chasm and Bitchin’ Kitsch. Contact her at www.sarawatkins.net or @saranadebooks on Twitter and Instagram.
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