Uneven aging: "Stay Positive" and the Liver Ladies

One of my earliest encounters with uneven aging between partners came by way of the liver, that large-lobed, unglamorous organ that most of us think of rarely. It is not complex and mysterious like the brain, or a universal metaphor for emotion, like the heart. You don't see it front and centre, like breasts, or feel its sensitivity to the environment, like lungs.  

But the liver is the body's Big Kahuna, large and in charge, and when function decreases, symptoms present swiftly. And so, in the days when I worked for a large tertiary-care hospital, I met the Liver Ladies. Their formal name was the Primary Biliary Cirrhosis Association. They were a support group for persons with a chronic and progressive disease that strikes primarily women of 40 to 60 years. With this disease, you're in for the long haul. 

One of their requests was to help them develop their network, so I attended a number of meetings. I heard them describe, in moods ranging from asperity to rage, how weary they were of being enjoined to "think positively", "stay strong" and "visualize your way to health".

The term performative wellness was not common usage then, but behind their tales of being urged to enjoy a butter-and-cream studded lunch, or being given makeup to hide jaundice, was their longing to not have to buck up just to make someone else feel better.

Their intimates expected a cure, and some grew impatient when they were not pulling out of the illness. Some symptom-free women said it was galling to have to reiterate that they were still living with PBC.

Entreaties to "look at this as a gift", or being subjected to the story of the friend's cousin who beat a late-stage cancer galled them. The Liver Ladies were focused on medium-term projects like getting a son through university, or managing the demands of a job.

"If I show up for some shopping in a bright blouse and a bit of makeup", Miriam said, "my girlfriends are  excited, and want me to confirm that I'm all better." What would Miriam prefer to hear? "Great to see you, Mimi! Where would you like to have lunch?"

It is often our own dread of disease and suffering that leads the well partner or friend to demand, perhaps unconsciously, that someone "act well". Donna Boll, writing in The American Liver Foundation newsletter, said, "First, know that we are doing all we can to live our best lives. Second, when we show up at an event...please do not comment on how we look. Just say you are glad to see us."

Performative wellness—presenting a picture of ones' self as an idealized image of health—has been heightened by the rise of social media and is a powerful marketing tool. We see cancer survivors performing difficult yoga poses on rock ledges, men who've had heart attacks kayaking white water. Each Instagram post has a subtext: You can beat this, if you just have the right mental attitude.

Cathy said her husband kept telling her how well she looked. It was only until he saw a photo of her taken in the unforgiving mid-day light on their patio that he faced her extreme fatigue. Being told "But, you look so pretty!" minimized what she faced daily.

Cathy had two friends. A., who also has PBC, visited Cathy every few weeks, bringing some annuals for her window box, or a box of berries. The other friend, P., had not spoken with Cathy for over a year, and asked A. to "send her love". At the meeting, A. seethed, "I said, you send your love yourself", she told us. Heads nodded. If we drop the demands of performative wellness for our partners and friends, what is a better approach? The Liver Ladies valued consistency, showing up year after year.

There is value for those facing long-term conditions to embrace "looking good". I'm a longtime admirer of the "Look Good, Feel Better" cancer care program, which offers free workshops in hospitals and cancer cetnres across Canada. However, participation in LGFB is the woman's choice, not a demand made by those made uncomfortable by less than perfect presentation of glowing health. 

Thirty-five years later, I am grateful to the Liver Ladies, for they were my teachers. Echoing down the decades, I recall their unforgettable request: See us, stick with us, but skip the platitudes that  demand we think and act "positive", and which cast any subsequent shortcoming as moral issue.

Sian Edjiwunmi-Le Berre, courtesy BBC Radio Four

If you'd like to learn more, listen to BBC Radio Four's "Four Thought" episode by writer and actor Sian Edjiwunmi-Le Berre, "The Tyranny of Positivity", in which she forthrightly blasts the wellness-inflected messages she received during a harrowing illness and expands the topic to the political underpinnings behind those cheery cards and posters.