Journeys, battles, spoons, and other metaphors

"Think of yourself as a healthy person who just happens to be sick," a doctor told me.

"I've seen many patients like you. You're ambitious and a high achiever. Find some ways to deal with stress, and you'll get better," another said.

Yet another specialist told me, "Stop telling yourself the wrong stories. Keep fighting, and you'll be back to your normal life soon."

So many medical professionals suggested how I should think in those early years of chronic illness. Yet, I struggled to formulate my own words and thoughts. At times, I literally could not speak. It took immense effort to sit up, let alone haul myself to a doctor's office on the other side of campus. I was overwhelmed by full body pain, pressing fatigue, and roiling brain fog (a state of cognitive dysfunction).

A healthy person with a side of sickness? It felt like the infection that had triggered this onslaught had already devoured my body and mind, leaving me a husk of myself.

Battle talk. Normalcy. Monsters and destruction. Language is powerful. Metaphors and stories help us understand our world and circumstances, in the hopes of recognizing ourselves and getting recognition from others. The right words can encourage empathy, assuming that a glimpse of another's experience will lead to compassion.

Great, right? The more metaphors, the merrier? Well... it's complicated.

A flock of metaphors

Let's start with the spoon theory, which was developed by Christine Miserandino and is one of the most prevalent metaphors in the chronic illness community. It uses a set number of spoons to visualize the amount of energy a sick person has versus a healthy one. When a chronically ill person has used up their spoons for the day, they simply have to rest or risk having a flare up of symptoms that could take hours or days (or weeks/months/years) to recover from. I've found spoons to be great for communicating with fellow chronic illness people ("Yay, we're part of the same tribe!"), but hit-or-miss with non-sick folks ("What's a spoonie? How could showering possibly take two spoons?").

So if kitchen cutlery doesn't resonate, let's try another popular metaphor: the warrior fighting a battle. (Perhaps in a medieval fantasy setting?) Then, disease is the incoming enemy or the mysterious beast to be slaughtered. Battle and military language pervades medical speech, especially cancer and chronic illness. Patients are called "warriors" and are implicitly expected to eventually find victory in remission or recovery. Physician Dhruv Khullar's description in his article in the Atlantic on medical metaphors is pretty on point (emphasis mine):

"By describing a treatment as a battle and a patient as a combatant, we set an inherently adversarial tone, and dichotomize outcomes into victory and defeat. Changes in medication regimens become setbacks or retreats, and transitions to palliative care mark the end of struggle, the battle lost. We subtly place an unfair burden on patient and doctor, when in reality, even the most courageous soldier guided by the most effective strategy is too often unsuccessful against an aggressive invader with nothing to lose."

In this scenario, failing energy or a recurrence/flare up might look like running out of daggers to throw at the evil bandits of illness. This image is pretty badass and might make you feel strong in the moment, but it's still troubling. Like Khullar says, it puts the burden on you to get better. If you're not, then you're judged as lazy or even as a failure. Yet chronic illness is, well, chronic!

Then, what about the metaphor of the journey? A study in the American Journal of Bioethics encourages phrases like "on the road to a cure" over military metaphors in treating HIV patients. There's an inherent hopefulness in having a direction. While I'm generally quite a positive person who believes in purpose, let's be real: to put it lightly, chronic illness can be a horribly long slog. The destination of “full health” might be Atlantis or Shangri La (or, insert your favorite mythological place). You try to keep going. But, you're wearing the wrong boots, à la Cheryl Strayed in her memoir Wild. So, you sit by the side of the path and hope someone will be able to find the right ones to cushion your blisters, or hope that your body will get its act together so you can get back to "real life."

I've found that this holding pattern is well-captured in the hashtag #NEISvoid, which originated with writer and podcaster Brianne Benness as a safe space for people to share their unfiltered experiences of illness that seemingly has no end in sight.

My personal favorite imperfect metaphor is that of the plant. To illustrate, I direct your gaze to to the photo above. See how lushly green those plants are? Plants evoke growth. They are grounded. They are constantly reaching for the sun, yet they also need to be watered and well-tended. If illness is like a plant, then wilting and yellowed leaves are part of the process of continual growth and even learning. You're doing a good job if the plants stay alive and happily green.

But what if the plant dies? That's the story of the money tree (the plant in the upper left corner that is definitely not marijuana, with the radial spear-shaped leaves).

When I first got sick and went on medical leave from my graduate program, my advisor and department administrator sent me a small money tree as a get well wish. I was so touched. It was comforting to have a living thing I could easily take care of. Its slow cycle of growth and shedding of leaves seemed to reflect my burgeoning resilience. (Studying disaster resilience probably contributed to this idea.) I loved how it thrived even when the Tall Man and I weren't the most vigilant of plant parents.

Then it died last year in the midst of the pandemic -- of all the times it could have died! A heavy gust of wind knocked it over on what was supposed to be a cheery day of sunbathing on the porch. The shock of the exposure and the root damage lead to the plant's demise. I was devastated. I had unwittingly made that plant a direct metaphor for my health. As long as it was growing, I was also healing. Once it shed all of its leaves and hardened into a dried stalk, I had a minor crisis. I remember wailing to the Tall Man, "What if I don't get better?!" What happened to the good fortune it was supposed to symbolize? Did this mean I would never return to my former life and pursuits?

For a few months, I refused to throw away the money tree. It stood there as a shriveled reminder of what would become of me.

Finally, it occurred to me: the plant was simply a plant, not the meaning of the universe. I was obviously still alive and finding creative ways to muddle through the pandemic and my ongoing health challenges. So I gave the Tall Man permission to throw away the money tree.

That was several months ago. Just earlier this week, he surprised me by buying a new money tree, this one much taller than its predecessor. I was momentarily speechless. Then I smiled. And as I contemplate it, I'm still smiling.

It's not a metaphor for my illness, nor are any metaphors perfect images of illness. They are simply ways of communicating, not the essence. The essence is that you are still the spectacular you, just as I am the spectacular me, no matter how well we might understand ourselves or each other.

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May 9 to May 14, 2021 is ME/CFS Awareness Week and the #MillionsMissing campaign. Learn more about ME/CFS here. For a "brief but spectacular" overview of ME/CFS, see advocate Rivka Solomon's video profile on PBS NewsHour.

Previous health chronicles:

• 30 Things (October 2015)
• 3 years, or when enough is truly enough (March 2015)

For more on disease and metaphor, I was inspired by Maggie Levantovskaya's poignant essay on LitHub about her life with Lupus.