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.


Laura J said…
This theme in your blog is so helpful. Always a thoughtful read. Thank you
susan said…
i survived ovarian cancer in the early 80's. back then there was a virtual flood of articles suggesting that if you had a positive attitude you could beat cancer. those suggestions enraged me. i've known people who fought like tigers during treatment, never giving up, always sure they'd beat it, who died anyway. i've known people who survived despite thinking they were doomed. the positive attitude people put the responsibility for recovery squarely on the sick person, which seemed like adding an additional and unfair burden to an already struggling patient.
Jean Shaw said…
Thanks for this. So important.
royleen said…
Thank you for this post. It is hard for people to witness suffering and I think that is one reason for the positivity urging. I lost my husband suddenly a few months ago; it has been interesting to see which friends just let me be how I am--some days ok, some days a total mess--and those friends who urge me to "think only of the good times and smile at the memories."
LauraH said…
Wonderful post, thank you. I went through some of this when my husband was ill with cancer and also after he died. One of my 'favourites' is..."everything happens for a reason". Really? So enraging.
Jane in London said…
What an excellent post. I, too, have decreasing patience with what has become the Pollyanna-ish cult of positivity. What a heavy load we place on those coping with serious illness or other misfortune, we if continuously urge them to "keep positive".

And thank you for pointing out this episode of Four Thought, which I often hear but had missed this one. A harrowing story, indeed. I wholeheartedly agree with her condemnation of the dangerous nonsense that is Law of Attraction!

I think we'd all agree that trying to help someone maintain morale during tough times is commendable, but that must surely be on their terms - and has to acknowledge their right to look, feel and be accepted as ill (even terminally ill) however uncomfortable that may make us feel.

Jane in London
Unknown said…
I recommend Susan Sontag's book, quite old, Illness as Metaphor. Title sounds dull, but it's not. She was really pissed that her cancer was treated as a emotional/spiritual disease, rather than a physical one. She talks about how tuberculosis patients were described as too fine, too pure for this world, but that all went away when the bacteria and a treatment was found. Briana
Allison said…
A timely post. Lately and to my own detriment I have been spending far too much time scrolling through the cesspool that is Instagram. I joined to keep in touch with far flung family. IG feels the need to suggest reels to peruse… there I see a woman cheerfully twerking her bottom while triumphantly holding a little child aloft. The baby is severely afflicted by a rare genetic disease that has left her with various physical and facial deformities (though none that dampen the twinkle in her eyes.) Mom reminds us that she herself runs several miles every day, has a successful online business which she shamelessly flogs on her site, makes IG reels daily, suctions baby’s trach, attends to the gastric feeds, mobilizes infant ALL WITH NO HELP...oh yes is also a wife and mother of several other kids etc. If I was a parent of a special needs kid and viewed this paragon exhorting me to ‘do as she does’ I am not sure what it would do for my self esteem.
I think that can also be applied to those dealing with a chronic illness, it is incredibly tiring to always be ‘up’ for others. To ‘normalize’ the reality of illness for the benefit of others. When the people they love exhort them to ‘SMILE’ it can be hard on a patient’s self esteem. The challenge for family and friends is to understand that it’s about the person with the illness not them or their preconceived ideas about the value of positivity. A positive outlook has its benefits but should never be forced nor expected
HungryHare said…
Thank you for this. We have just had an old friend with fairly newly diagnosed Parkinson's to stay. I have forwarded it to her. It certainly made me reflect on the way I engage with friends facing extreme difficulties. I tend to concentrate relentlessly on the "look on the bright side" end of the spectrum, in a resolute intention to avoid the "How awful for you" end. There is a middle way - harder than the extremes I think!
Ocd said…
Oh wow, what a wonderful article. I didn't know there was a term for it that exhausting expectation-"performative wellness." I can't count how many times I've been told by doctors, physical therapists & the occasional rando that some people with my spinal injuries "don't have any symptoms." I've also been told that I "don't look like" I'm in pain. What am I supposed to say to that? Should I be rolling around on the floor moaning? Crawling? I've lost ALL patience with that line about "some people" & usually hiss back a variation of "well aren't they the ******* lucky ones, because I'm in pain every day."
I'm sure that attitude makes me pleasant company. : )
Duchesse said…
Laura J: While I am as interested in clothes, etc. as the average woman, this is my real interest, so thank you.

susan: While not a survivor myself, I worked for 5 years in two large hospitals and saw that outcomes had only the most tenuous connection to "thought-style". What I did notice was (even though this is very far from my own orientation to such things) that those with a solid faith (no matter what the religion) were able to withstand tough days better.

royleen: Oh dear, Royleen, I am so sorry. At a time when we need well-chosen words, kind yet realistic, we so often get the hackneyed and ham-handed.

LauraH: Yes, enraging. And what reason would that be? When my mother died, Mary, the director of her assisted living home greeted me by saying, "She's in a better place." I said, "Oh, you mean her golf club?" I thought Le Duc would fall through the floor but, but I knew Mary would find it funny.

Briana: I read it when it came out and it's made an indelible impression.

Allison: That's almost creepy. Have you read Ian Brown's "The Boy in the Moon: A father's Search for His Disabled Son"? One thing among many he does well is present a realistic view of what happens within a family dealing with a significantly disabled child.

HungryHare: My take is, keep your optimism but also stay grounded in reality. My brother (An MD) told me of one of his terminally ill patients who was given a "lifetime rosebush". "What terrible taste", he told me, and it is this kind of insensitivity the Liver Ladies were speaking of.

Ocd: You just say it! I have 'some peopled' too... it's an attempt to reinforce hope, so thank you for pointing out it can also contain censure or a demand that you perform as if perfectly pain free.
Judy said…
Thank you for writing this. I actually read it when you posted it and realized I hadn't expressed my appreciation. I've listened twice to the radio show. I've long been bothered with framing someone's death as "losing a battle"!

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