A serving of self-loathing, with a dollop of death wish—the rise of autoimmunity? (Part 10)

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.

Ever-present anxiety

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.

Body blows

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?

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26 thoughts on “A serving of self-loathing, with a dollop of death wish—the rise of autoimmunity? (Part 10)

  1. Rosemary

    “Simplistic, but compelling.” I’ve been there so many times myself over the years. The roller coaster of hope and full or partial failure when trying to find answers and a cure can be as exhausting and debilitating as the disease itself.

    Liked by 1 person

    Reply
    1. Shelley Page Post author

      Thanks Rosemary….I understand the struggle…and also that horrible place called hope, when you’re waiting for the rug to be pulled out from under you.
      Right now, I feel really good, but am so fearful that it’s false, or there is something lurking that I can’t feel…..And then I feel silly when there is a flare and I foolishly let myself have hope…It is a rollercoaster or a closed loop with no way out.
      How do you deal with it?

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      1. Rosemary

        It depends on my mood! 🙂 Sometimes I feel angry, depressed and hopeless; other times, I just think ‘whatever – it is what it is’ and try to put my best foot forward despite what I may be feeling.

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  2. redosue

    Much to think about in this post, Shelly. I’m puzzling over the idea that ambition springs from self-hatred and that self-hatred can cause physical illness as well as mental illness.

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    1. Shelley Page Post author

      I know, it’s a bit bizarre and pretty Jungian. I’m also not sure anxiety is self-hatred, unless it means you’re denying your needs and by denying your needs, that means you don’t like yourself???

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  3. Katie

    Really powerful post. Important to read, even for those not living with a chronic illness. I had no idea that the prevailing theory for many is: it’s my fault.

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    1. Shelley Page Post author

      Thanks! It’s a thing for sure….and while I think that asking hard questions about how you live your life, and whether you’re driving yourself too hard are helpful, I think that attitude can silence and shame those with chronic illness. It also implies if you stop doing those things you will get better. Which is mostly not the case.
      What I’ve learned is that there are a lot of things that I can control — what I eat, how I exercise, how much I sleep (to a point) and what supplements i take — and if I watch all of those things, I can minimize the chances I have a flare. Except when I can’t.

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  4. Andrea Myers-Tanguay

    Great post Shelley. I cannot imagine how it feels to be chronically ill. But, having to experience the effects on people around me has caused several people, including me, much pain. It always remind me not to judge, but to support others because you never know what triggers a reaction.

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    1. Shelley Page Post author

      Thanks for your comment Andrea. I have chronically ill people in my family, and I can be a classic advice giver, when I realize they just sometimes want someone to listen. So, I try to give advice only when asked…:)

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  5. Kate

    For years, when my disease would flare, people would always ask “What did you do?”
    Do I reply “Well, things were a little dull, so I decided to get dick, to liven things up?”
    I am sure they still wouldn’t get it.
    I, too, have read those books. I felt like it was blame the victim. I try to avoid them, now.

    Liked by 1 person

    Reply
    1. Shelley Page Post author

      LOL on the dick comment. It’s so interesting when people think we did something to cause a flare….It is completely blame the victim, although I do know I often feel worse under immense stress, but it’s certainly not because of self hatred!! I also often feel really bad, for no reason at all.

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  6. Cathy

    Thanks for sharing Shelley, your post is very thought provoking and leaves one questioning why these attitudes exist about chronic illness or any other illness…

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    1. Shelley Page Post author

      Thanks Cathy. There is solid evidence that chronic stress weakens or disregulates the immune system, so we can never discount the role stress plays. But I also believe — from first hand experience — that women are more often seen as having mental imbalance or psychological disturbances that explain their symptoms.

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  7. pamela

    These are great personal reflections. I think you should continue your blog posts after the course. It seems like you could help a lot of others dealing with their diagnoses. It also feels like this is a release for you to talk about the past and what you have experienced and gained from those experiences. I have learned a lot from you about Lupus. I did not know much about it before your posts so you have really helped educate me (as well as many others in the class i am sure)

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    Reply
    1. Shelley Page Post author

      Thanks for your encouragement, Pamela. I think most people have no idea what lupus is, although the numbers have tripled in the past decade, either from better diagnosis, or all the people who suffer from self-loathing (LOL)

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  8. vkhatereh

    It is true that many factors impact immune system, but I also believe that unconditional love, self love and hope can help. 8 years ago my mother passed away from pancreatic cancer and she did have the characteristics of stereotype cancer sufferer. I don’t mean that her emotional state was the cause of cancer, there were other biological factors involved. However sometimes I wonder if the trigger was her mental stress and not letting go of her resentments? Dr. Siegel question is a great approach to realization and taking steps to recovery.

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    1. Shelley Page Post author

      I am so sorry about your mother. And I do think that it’s good to ask yourself hard questions about your mental state and also whether you are enduring undue stress. But I also think that it can end up having the opposite effect. Instead of liberating the patient from a harmful mindset, they can end up feeling blamed for being sick.
      It’s an interesting discussion because so many of us are touched by illness in so many ways.

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      1. vkhatereh

        Thank you Shelley, you are right, there is a fine line between blame and trying to help an ailing person release the past and the undesirable feelings. Hope you continue your blog, it is a powerful story of courage and willpower.

        Liked by 1 person

  9. Kelly

    This has been such a moving and thoughtful series, Shelley. I feel you are giving voice to a very disturbing dynamic in the medical community, one with deep roots in misogyny and scientific arrogance. It seems anything that medical science does not yet understand is so often dismissed as being psychological or self-willed, especially when the patient is female. How devastating to add the burden of self-blame to the ordeal of battling against a powerful illness! Sadly, your experience and that of your mother-in-law are familiar tales for so many women — regardless of whether the doctor involved is male or female.

    Liked by 1 person

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    1. Shelley Page Post author

      Kelly, thanks so much for putting what I’ve
      written into a greater context, one that when I’m so close to it, it’s hard to articulate.
      I honestly felt that every time I was given sleeping pills or sedatives — which I should add I never took (Until the prednisone put me into a state of overdrive​) it was because I was a female and it was presumed my symptoms were psychological.
      As someone looking for help, you know it immediately​ and it works against you seeking help.

      Liked by 1 person

      Reply
  10. Elaine

    Shelley, your blog never ceases to amaze and provoke! While interesting philosophically, this idea of giving oneself a disease for some ulterior motive is preposterous. We have a lot of trouble determining cause and effect. How long did it take for scientists to realize that tobacco causes lung cancer, and for people to accept it? Genes, infectious agents and toxins – those make diseases. Often it’s difficult to sort out all the confounding mechanisms, and so assumptions can be dangerous. Plus individual cells sometimes seem to a different agenda than the body as a whole. Keep your posts coming – look forward to each one.

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  11. Shelley Page Post author

    Elaine, thanks so much for comments — they mean a lot to me. I totally know the role of stress, but this idea that their are increasing numbers of people suffering from autoimmunity because of self-hatred is nutty. But it really it out there as a theory. And when you’re scared and there are no medical answers, we’re susceptible.
    But I do practice as much self-love as I can. Just in case. lol

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  12. James Williams (@3EsOfHealth)

    Great post. As someone with 2 family members with Multiple Sclerosis I find myself trying to empathize with them and their struggles. As much as I try, I know I could never truly understand what they are going through, but I do my best to familiarize myself with everything they go through and the things I can do to make their lives easier. Everyone’s often too caught up with their lives to sit back and understand how truly lucky they are to not only be alive, but also with full health and bodily capabilities.

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  13. Upgrayedd

    I’ve found your blog while up unable to sleep at night and stressing about the next taper of my pred. Your story is absolutely compelling and has provided a basis for me to share what it’s like to have an chronic autoimmune disease with friends. I will read and re-read your writing and I can’t wait to see what you put up next.

    These posts really speak to me, especially this one regarding stress and flare-ups. I almost get to the point where I want not to even talk to people about being sick because of the annoying questions. Your 7 things video was amazing.

    I had a horrible incident yesterday with a nurse practitioner who said totally inappropriate things. She’s not the doc who treats my disease, but I had to visit a clinic because of infection problems on my pred. She told me that prednisone is not an immunosuppressant and that I should take off the surgical mask I wear in health clinics to protect myself. I was appalled that a medical professional would first of all know nothing about prednisone, give false advice, and then actively dissuade someone who was trying to maintain their health from engaging in healthy behavior. I’m no psychologist, but I realized after the incident that the presence of my surgical mask likely made the nurse herself uncomfortable. I know this because when you wear one, people look at you with real fear in their eyes – something to do with the familiarity of faces being obscured, and probably a realization of one’s own fragility. It’s unbelievable to me that a medical professional would spout lies to me in order to assuage her own fears about health – she even went so far as to start citing me wikipedia stats about morbidity and how I should have hope. I was like – what does this have to do with me wearing a mask to protect myself? WTF, I came into the clinic for some antibiotics not some paraprofessional giving me life advice about a disease she read about on wiki. Anyway…thanks.

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    1. Shelley Page Post author

      Thanks so much for your note! I’m glad you found my blog. You may have noticed it was for a course I was taking, but I’ve decided as of last week to keep it going. I realize most people don’t understand anything about autoimmune disease of relapsing and remitting illness
      I totally hear you on the face mask. I have four boxes of N85 masks that I have to pull out for so many reasons over the years — mostly to prevent infection. Or when I’ve had to rush to emergency for various setbacks and request to be in a quarantine area, like you’re supposed to when you are immunocompromised, and they look at me like I am delusional. I, too, am going through a prednisone taper right now. And I’m generally not that successful after a certain point, often because it never seems to be the right time to go down. Like right now I’m in the middle of a vacation and dodging sunlight but still trying to participate in vacation type things like having a bike ride or a hike. Now I’m lying here with sore joints in a few places and trying to read them like tea leaves. From exercise or illness???

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