Creativity and chronic illness

A vulnerable share on the sucky unpredictability of health

Taking action gives you clarity. Clarity that you don’t always get by merely thinking about something. Do the thing and then you’ll really know. But sometimes it’s not so simple when a clear train of thought takes up all remaining spoons.

I posted this note back in January:

It was then that I realized: it’s a huge act of self-love to change my mind about something I’ve already started.

I don’t know who needs to hear it but it’s okay to risk disappointing others, especially when you’re more accustom to disappointing yourself.

Learning to do so is especially hard when you deal with chronic illness, like me (fellow MCAS¹/POTSies²³, I see you.)

Creating for the world is a heavier weight when it feels like a series of promises you’re scared of not delivering on—whether following through on your genuine plans, pleasing the algorithms, the pressure to stay visible and, therefore, relevant.

Not all of us have the luxury of pulling an Addison Rae or Emma Chamberlain and scale back from social media while still maintaining—or in Addison’s case, skyrocketing—a career.

Interested in more on this? Check out Coco Mocoe’s latest podcast episode (bonus: watch for a tiny contribution from yours truly!)

How Addison Rae Quit TikTok & Became a Pop Star

Yet both of them prioritizing their wellbeing over social media shows us that people can win when putting their needs first, rather than pandering to the “shoulds” or status quo. In hustle culture, it’s a boon.

The note I wrote on changing your mind was penned before a major health flare up hit me, when my bed felt like my only constant. It was one of the worst I’ve had in a while, tbh. It was kismet timing that I already had a sense of how I could show up better here before it was a necessity.

It’s ever changing though. Like an ebb and tide. A quaking line to walk, the fear of letting others down when I’m all too used to my body doing that to myself.

This same predicament can extend beyond the chronic illness community to parents, caregivers, those whose primary jobs must be prioritized. It’s hard to keep up as if nothing is different when so much is taking your energy. It’s not a “dance like no one’s watching” sitch—insecurity can’t be shaken off for the lack of perception.

How do you show up in a way that sustains the creative life you want when your (self-care/health/dependent’s/life’s) needs are unpredictable?

I don’t have an answer other than:

Imperfectly.

What if instead of treating the flare ups, changes, or obligations as failures or interruptions, we treat them as needed boundaries? Boundaries to protect our health, peace, basic needs, loved ones, etc

Throw a safe word in there and you have yourself some sexy boundaries.

And what if those boundaries were actually respected? Supported even? Kindly, humanely, wholeheartedly, financially? That’s the dream.

The reality is we get to choose who we attract into our world. While we don’t have a bouncer controlling who presses that follow button, we can vet them through communication. The right people will recognize whatever you choose to share. And accept all parts of you.

This is me walking my walk with that. I’m embracing that I may have some “Oklahoma” (a safe word I just thought of, lol) days, weeks, etc. sprinkled in the future but it doesn’t make me—or anyone else going through something similar—any less then.

And if anything, it makes me want to make the good stuff more fun and jubilant without fear of being not enough or too much or anywhere in between.

Creativity doesn’t have a hard stop, it lives—even thrives—in the quiet, in-between moments. That’s worth remembering. It’s always there. Just as we are there for ourselves. Always and forever.

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1. MCAS is an immunological condition in which mast cells, a type of white blood cell, inappropriately and excessively release chemical mediators, such as histamine, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks. Primary symptoms include cardiovascular, dermatological, gastrointestinal, neurological, and respiratory problems. [Source}

2. A "POTSie" is a person who lives with or has been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS)

3. POTS is a blood circulation disorder. The symptoms of POTS include but are not limited to lightheadedness (occasionally with fainting), difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea. [Source]