Before I knew I was the proud owner of an immune system that couldn’t tell self from invader, doctors pushed sedatives on me.
They hypothesized that my buffet of bodily dysfunctions — stabbing pain around my lungs, clawed hands, ruddy and hot joints — were provoked by overwork and exams, stress or anxiety. Something of my doing, or my response to something of my doing.
Then I found out I had an autoimmune disease. And if we’re going to get all psychological about it, it’s like having the mutant spawn of Hannibal Lecter, the self-cannibal of all illnesses. We sufferers allegedly have an acute case of self-loathing with a side order of death wish.
That’s a metaphoric sledgehammer with which to clobber the ever-increasing number of sufferers.
Why do I need this illness?
There’s an enduring preference for psychological explanations of disease, especially when we don’t understand something at a molecular level. And particularly, when there is no effective treatment or cure.
We already know of the stereotype of the cancer sufferer: she is passive, doesn’t speak up, and has repressed feelings, especially of anger.
My beloved mother-in-law, Julie, a writer and political strategist, died in 2010 after ovarian cancer spread to her brain. She was outspoken and emotional, the exact opposite of the so-called meek personality that begets cancer. And she probably got the wicked disease because her gynecologist prescribed unopposed estrogen even though she had endometriosis. And when the first signs of a cancerous mass appeared on an ultrasound, that same doctor chose to ignore them for over a year despite Julie’s insistence there was something lurking.
We all know cancer sufferers who’ve been steamrolled throughout life. And we know just as many who live loudly, without apology.
And we know people with chronic heart disease who fit the cliché: gloomy, irritable and inhibited.
The metaphors surrounding autoimmune disease are so literal they are laughable. The very name of the disease spawns the notion of self-attack. And, I’d suggest the fact that the 80 per cent of the 50 million American sufferers are women fuels the idea that there is a substantial psychological component. Forty-five percent of women suffering autoimmune disease were first labeled hypochondriacs.
The theory that self-hatred sparks autoimmunity is a persistent thread in the blogosphere.
In 2014, well-known Australian journalist Sarah Wilson controversially blogged, “I’ve analyzed autoimmune disease from all different angles, and tried to treat my own such disease from just as many angles. I’ve looked into gluten, cosmetic toxin and, of course, sugar. When I’m asked, though, “What caused your disease?” I have to be frank and say – once all angles are ironed out – everything points to… anxiety. Or as I like to put it, a profound, visceral, itchy dis-ease with myself.”
She sited a TED talk by Dr. Habib Sadeghi, an American “healer to the stars.” who fingered self-hatred as the true cause of chronic disease, particularly in women.
He explained: “We’re constantly putting women up against standards they can’t possibly meet. When you can’t be the ideal wife, mother, girlfriend, teacher, cook, church volunteer, corporate executive and activist at 20 pounds below your healthy body weight, what’s left but to silently (and subconsciously) hate yourself because you’re not perfect?”
Wilson wrote about her anxiety, “Sometimes I sit and really feel what’s behind a flare up. The only feeling there, behind the pain and shitiness, is a cringy, self-flagellating, forward-lunging anxiety. It’s always there, whatever the flare. The same feeling.” She later clarified her comments, saying there are a whole bunch of factors at work, including genetics and environmental triggers, but it seemed half hearted.
The year I began my full-time reporting job at the Toronto Star, and a year after being diagnosed with lupus, I was consumed by questions of ‘Why?’ And, ‘What next?’
I was self-aware enough to realize my first major flares came during exam period and doctors I sought out saw that, too. But I also realized that many of mini-flares seemed tied to nothing at all.
I also noticed that my joints felt twitchy, my lungs crampy, when I didn’t sleep well.
But what seemed more relevant were serious knocks to my immune system. During a four-month period in high school, I caught a very bad case of chicken pox, and then mononucleosis (Epstein-Barr virus), said to induce autoimmunity, especially lupus. Before starting university, I also received the MMR vaccine, which is a live vaccine known to trigger lupus flares.
All of these events taken together could have screwed up my immune system—or not. Who knows?
In my first months at Toronto Star, a seminal ‘blame the victim’ book was released. And I devoured it.
Dr. Bernie Siegel, in Love, Medicine & Miracles, wrote that all patients should ask themselves why they need their illness.
He believed that this question “helps the patient understand the psychological needs that the disease may meet.”
“Sickness gives people ‘permission’ to do things they would otherwise be inhibited from doing,” he wrote. “It can make it easier to say ‘no’ to unwelcome burdens, duties, jobs, or the demands of other people. It can serve as permission to do what one has wanted but has always been ‘too busy’ to start. It can allow a person to take time off to reflect, meditate, chart a new course. It can serve as an excuse for failure. “
He said even a cold has meaning. “Often the message is, ‘you have been working too hard. Go home and nurture yourself.”
He counseled patients to take days off to meet their needs and then they won’t need an illness. Simplistic, but compelling.
I also found a copy of Louise Hay’s 1976 book, Heal Your Body: The Mental Causes for Physical Illness and the Metaphysical Way to Overcome Them. She wrote that lupus symbolizes “a giving up.” The person who has it feels that it is “better to die than to stand up for one’s self.” We are overcome by anger and the need to be punished.
Hay promoted loving self talk: “I speak up for myself freely and easily. I claim my own power. I love and approve of myself. I am free and safe.”
I would close my eyes, sit quietly and whisper that to myself. It couldn’t hurt. I also signed up for a Transcendental Meditation course in downtown Toronto (more on that next post) to moderate stress. And I repeatedly questioned whether my ambition to land a job at the Star showed self-esteem or self-hatred. Yes, it would be easier if I quit and went home to mother. But just because I didn’t quit and kept on fighting, didn’t mean I had a death wish. Just a dream.
In those early days, I raced around interviewing victims of fire and drunk drivers. But I reserved the most difficult questions for myself.
Why? And what next?