By Christina Campbell

“I wish I could just stay home and rest.”

“But what do you do all day?”

“I wish I had all that free time.”

The Normals regularly say these things to me, whenever I take disability leave to recover (kinda) from tick-borne disease.

Bless their little Normal hearts. They’re not trying to be hurtful. They’re trying to relate to something they can’t understand: invisible chronic illness, with its unpredictable flares and unquantifiable symptoms of pain, fatigue, and “Help, doctor, my cells are all pulling on each other like magnets.”

My favorite Normal faux-pax happened when I returned to work after two years of disability leave (and one additional year of a lawsuit against my insurer). Many coworkers knew I’d been sick. Some knew I’d had tick-borne disease. One of them welcomed me back and asked, “Did you enjoy your time off?” He meant well, but here’s what I heard him saying: Did you enjoy living it up with your free paychecks?

I feared my colleagues thought I’d spent those three years lounging on a chaise in a silken robe and full makeup, listening to celebrity gossip podcasts, sipping wine, and dropping bon-bons between my freshly-glossed lips, while stroking my sleek purebred cat like a Real Housewife of Northern Virginia.

Sure, I “enjoyed my time off.” I enjoyed the handful of semi-functional hours I had each day. I enjoyed squinting, while sweating and shivering, at incorrect health insurance EOBs and shady reports from insurance physician reviewers. Because of the broken U.S. health system, when I’m on disability leave I use almost more cognitive energy than when I’m at work.

The feared “activity tax”

Here’s what I’d like to tell people about what I “do all day:” I calculate my energy expenditures, then wait with bated breath to see if my calculations are correct. Will I be fine? Or will I pay the much-feared Activity Tax? If the latter, in what currency will the Tax be? Headache? Stiff joints? Motion sickness? Vibrating feet?

Because the stakes are so high, people with chronic illness become supercomputers: Estimated useable body-hours divided by approximate time to complete chores, plus parenthetical sub-formula ranking chores by importance, times the bounded function of activity tax per X number of stairs between the hamper and washer. 

The poor Normals want to “just stay at home and rest.” Well, so do I. Instead, I’m racing my body against my bank account. I’m wrangling physical therapy and fistfuls of pharmaceuticals. The goal: Get my health to kick in, before my disability is randomly taken away because some doctor paid by an insurance company lies on my case report (I wish this were a hypothetical). Disability leave is so exhausting, I pine for the workaday drudgery of the office.

My best impression

In the meantime, though, I’m doing my best Real Housewife impression, lounging on that chaise. Except it’s not a chaise, it’s a cat-hair-covered futon, and I’m not lounging, I’m curled up in ache, and it’s not wine but electrolyte water, and it’s not a silken robe but pilly yoga pants, and it’s not bon-bons but fish oil capsules almost as big as bon-bons.

Per my calculations, the fish oil capsules are better than the liquid alternative. The splotch of spilled fish oil on my pants crotch cost about $35 dollars. (This does not include the Activity Tax I paid from walking up and down stairs, trying to figure out where the rotting mackerel smell was coming from.)

Back on the chaise-futon, in true frustrated-Housewife style, I hurl my wine glass. But it’s not a wine glass, it’s a thermometer. As is common in tick-borne disease, I feel flu-ish almost all the time, but there’s little to no corresponding fever. The cruel digital displays never validate my aches and burning face. To resolve this dissonance, I smash the devices. Still, my cool cheeks stay scorching. You’d think they’d at least give me a luminous glow, but no.

Beauty tips

Which brings us to beauty tips, as recommended by our Real Housewife on the cat-hair-strewn cushions. It’s not makeup, it’s purple under-eye moons. It’s not plastic surgery, it’s skin stretched smooth by inflammatory water-fat. It’s not lip gloss, it’s snot. Too tired to get a tissue? Just blow your nose on your cardigan sleeve!

Also clinging to the crusty cardigan: my cat. He’s not a sleek purebred, but an old, thin street rescue with allergies and a seizure disorder. He’s also a poor conversationalist, but that’s ok, because I have the celebrity gossip podcasts—except they aren’t celebrity gossip podcasts, they’re Zoom coffee klatsches with my fellow sickies. And we don’t gossip, we rage.

We rage about the doctor who was late calling in a pain meds script. We rage about the insurance company who denied someone disability, because the company’s spies caught the patient sweeping her porch (gasp!). We rage about the sick young woman erroneously diagnosed with Munchausen’s Syndrome by old male doctors at a northeast emergency room. In comparison, my coworkers’ thoughtless comments are small potatoes.

They still hurt, though. I should see my psychologist. Mental health care is an important reason to dig into my skimpy disability paychecks. And yet. . .  it’s easier to pivot to add-to-cart therapy: a silken robe, lip gloss, and some bon-bons.

Christina D. Campbell is an award-winning author who writes about health, marital status discrimination, and special needs cats. She is currently seeking representation for her memoir about invisible illness. She can be reached at ChristinaDC.com.