I’d punch you if I had the energy, 400th person to tell me “not to identify with my illness.”

No one tells parents not to identify with being parents.  

No one tells people from Wisconsin they shouldn’t identify with being from Wisconsin.

Lately, there’s been a big push to coax people even more into their “identities”—come out as gay, trans, autistic, anxious, introverted, kinky, flat-earther, into ASMR.

Let your freak flag fly. Be true to your roots. Be in the present. Be who you are. Let it all hang out.

Unless you’re sick, and then a litany of unsick people and sick people who are in the early years show up to tell you how to be sick.

Recommended courses of action include denial, not discussing it, and “forming an identity outside being ill.”  

“You’re not your illness,” some soon-to-be-ex-friend might say, smiling warmly. “I don’t even see you as sick.”

Which is weird, because I would never reply,

“Aw thanks! And you’re not your kids, Cheryl. I don’t even see you as a mother, really.”

Am I my illness? It sure lopped off the parts of me I thought were my identity, once upon a time. Ski patroller. Lop. Adventuress. Lop. Ambitious worker. Lop. Quick wit. Lop. Foodie. Lop. Productive. Lop. Entrepreneur. Lop. Voracious reader. Lop. Creative expert. Lop. Artist. Lop. Walker. Lop. Snacker. Lop.

I’m not a subdued, quiet life type of person who longs for a comfortable chair, serene Friday nights, “lazy” days devoid of work and purpose, and Netflix binges. But my illness wins out, and so actually, I kind of am.

This IS me, for now.

If anything, I try as hard as I can not to identify with myself. I avoid the grocery store, glittering with temptations I can’t eat (like…apples, or anything else outside the 12 foods I still tolerate.) My latest greatest joy was humming along in the kitchen, cooking up something new. But for the past two years, I’ve been unable to stray from the two plane jane meals I eat daily. If I don’t, I pay. Hard. I’m not my adventurous palette and kitchen queendom, anymore.

I walk as much as I can, which means as little as possible. I drive everywhere and rely on loaner wheelchairs for the ocassional airport or Target trips. An overdone day means weeks of housebound agony. I’m not my solviture ambulare philosophy, anymore.

My 95-pound, sixtysomething mother muscling my significantly heavier self across the airport. (Litany of ire towards airport accessibility some other time…)

I’ve known since I was 4 I wanted to work in communications, and have since I was 14. But I’ve scrunched down my days to hours, hours to a few a month, and now—nothing. The fallout from my last 2-hour hard think sesh was a three-week flare from hell. I’m not the business owner I became 14 years ago, then, either.

Sometimes, I look for little slivers of who I used to be able to be, ways to work around the illness and still get a little taste. Things like, cabin trips where I barely lift a finger as my family does everything for me. Sits in the woods. 10 minute “hikes.” For these, I pay with days of my life, too tired to writhe from pain that demands writhing.

Feel shittalicious, but make it sporty with a location change.

Sometimes, I try on new identities. I started a movie club, even though I’d never been able to sit still for them before. I got into shows, where before I would have rather read a book. I learned to do my nails for the first time in my life at 36. I went to stock car races and learned to spectate.

Whether I identify with my illness or not, I am forced to obey it. It guides nanodecisions. Is it worth the 300-step allotment to go downstairs, when I only get 3000-5000 steps a day? How long have I been working—have I gone over? Can I find a coffeeshop that carries the one type of tea that I can have—and not pretending to be “peppermint” when really it’s “peppermint and chamomile”—so that I can act natural with a friend and also not fog out halfway through? Or should I just cut this friend off because it’s too much energy to keep saying no when they ask me to hang out more often than I can handle? If I cry about this, will it crash me?

Focusing, emoting, thinking too hard can all flare me. I’m constantly interrupting myself. Big breath. Drop it. Take a break. You can’t “afford” this.

Every minute, every day, budgeting my extremely finite resources. Pinching those capacity pennies with constant vigilance.

If being ill hasn’t changed me as a person, it has certainly colored my existence. My restraint, reframing, and acceptance muscles bulge. My indignation at being forced into this octogenarian existence in my prime constantly boils beneath the surface. My joy at tiny moments and small connections runs so much deeper. My grief is a spring that can well up at any time. My tolerance for bullshit shrinks and expands, depending on the flavor of bullshit.

I’m still funny (I think), a relentless data hog, and the kind of friend who likes to come through in a crisis. A good listener and a brave spirit, if I do say so myself. Core parts of myself have been shaped but not necessarily shifted by sickness.

But everything I do, think, and feel must bring my illness into consideration.

That’s not identifying with illness. That’s living with it.

 And that’s all any of us—parent, student, weirdo, sickie—can really do.

(So STFU, Cheryl.)