By Christina D. Campbell

The phlebotomist leaves to photocopy my blood test order. Meanwhile, I stare at the offensive words on the whiteboard. They’ve been there at least a month. I saw them during my last draw. The words irritated me then, and they irritate me now. I dread seeing them next month too. They must be obliterated.

I rise, creaking, from the chair. If I’m gonna do this, I gotta do it fast, I tell myself, as if I’m Tom Cruise in a Mission Impossible movie—the one where he has stiff joints and gets a Comprehensive Metabolic Panel.

Cue violins and percussion as I shuffle to the whiteboard. With anxious swipes of the eraser, I wipe away the cruel words: Stay Positive! In my haste to obliterate the bossy little exclamation mark, I knock a pile of markers off the ledge. The clatter echoes across the room and, I’m certain, into the hallway. I flinch from nervousness (and sound sensitivity).  I’m busted for sure.

***

If the most important axiom in healthcare is First, Do No Harm, the second most important is Shut Up About Positivity Already.

Telling patients to be positive invalidates their legitimate feelings of woe. The pat phrase makes abled people feel more comfortable. If the sick person stays upbeat, the abled person doesn’t have to dip their toe in the sick person’s darkness.

Putting the onus on the patient

Barbara Ehrenreich’s book Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America describes the toxic side effects of positivity culture. The positivity movement puts the onus on the patient (or other marginalized person) to fix their life by changing their ostensibly bad attitude.

Instead, though, we should focus on fixing the problematic social systems that perpetuate illness and other inequities. A smile is nice, but it won’t make health insurance companies more ethical and efficient. A grin won’t convince doctors that a black woman’s pain is as real as a white man’s. A laugh won’t ensure that research studies are funded by unbiased parties.

As a cancer patient, Ehrenreich experienced toxic positivity in online support forums. Often participants told their fellow cancer patients to be positive, and those patients responded with shame-laced replies about how they were trying, they really were. These people had a disease that society openly acknowledges to be terrible, and yet they still blamed themselves for not smiling it away.

Now, imagine the hurt that toxic positivity causes to people with contested invisible illnesses, like Lyme disease. We are already thoroughly invalidated—by insurers, by doctors, by friends, by family, by journalists, and especially by mean, anonymous blogs written by bitter old East Coast men, whose fragile egos cause them to promote regressive, inaccurate Lyme paradigms.

Invalidation

Many of us have decades of micro- and macro- invalidations buzzing in our brains like mosquitoes. One small bite’s not a big deal, but as the offensive welts accumulate, so does our frustration.

I have a PTSD response when I hear any variation of Be positive, such as Don’t think about it or The glass is half full.  I breathe more quickly, my heart pounds, and I feel sick to my stomach with anxiety. Those phrases not only invalidate my legitimate feelings of woe from three decades of tick-borne disease, but they also invalidate all the positivity and optimism I have shown during those years.

I believe even the crankiest Lyme patient is more positive than most healthy people. How else would we get through life? All day, every day, we coach ourselves through pain and exhaustion. My inner monologue consists of weary but encouraging self-talk, peppered with bossy little exclamation marks:  You can do it! You can floss your teeth! It will take just a minute! It’s worth the pain/fatigue/heavy arms/dizzyness/insert-your-symptom here! Good job!

I suspect most Lyme patients use this inner cheerleading to get through everything, from going to work to turning over in bed. When someone tells us to “be positive,” that erases all our silent self-encouragement. We are our own hype-people, galvanizing our psyches and physiques so that we can drag ourselves through treatment protocols, activities of daily living, and, if we’re lucky, our hobbies and relationships. When someone tells us to be positive, it’s as if these vast swaths of our intrepid inner lives don’t matter.

What to say instead

Instead of telling a sick person to think positive, try asking your elected representatives what they are doing to diminish the outsized power of the health insurance lobby. Instead of telling a sick person to look on the bright side, try asking them what groceries they need. Instead of telling a person to keep their chin up, try praising their stick-to-it-ive-ness and survival skills.

Instead of forcing “positivity” on a patient and encouraging them to waste valuable energy suppressing supposedly inappropriate musings, sit with them in their concerns. Maybe those “negative” thoughts can become signposts and sources of information.

***

As the vibrations of the crashing markers echo around me, I wonder how many years you get for vandalizing a phlebotomist’s whiteboard. In panic, I look over my shoulder, adrenaline spiking. No one’s there. Yet. Get rid of the evidence, says my inner super-spy. Bending through my bungee-cord-tight fascia, I retrieve the wayward office supplies.

***

Was my stealth self-advocacy mission, with its speed and adrenaline and nerves, less stressful than simply asking the phlebotomist to erase the Stay Positive?

Arguably, yes. Like all people with invisible illnesses, I’ve been trained that my perceptions don’t matter. I was afraid the phlebotomist would say the Stay Positive must remain, because it was a good message and cheered up other (less neurotic) patients.

On the other hand, maybe she would have understood. Maybe she had invisible health problems herself. Maybe she was sick of the Stay Positive, but too cowed by positivity culture to erase it.

***

Breathing heavily, I shuffle back to the chair. My butt hits the cushion seconds before the phlebotomist returns, carrying the photocopies. I thank her and make sure to smile.

Christina D. Campbell is an award-winning author whose favorite topics are invisible illness, relationship status discrimination, and cats. She can be reached at ChristinaDC.com.