The Shame of Illness

I have few memories of illness in my family as I was growing up. My parents barely  acknowledged minor ailments. They spoke of sickness as something that, with proper living, could be avoided. They often deemed the illness of others psychosomatic, not without sympathy, but with an underlying message of some hidden weakness that should be overcome.

In my husband Len’s final year, I became intimately involved with persistent pain. He was stoic, but when he left the house for an adventure with a friend, I would assist in placing the Parkinson’s meds he needed to take at set times in a small pocket container. I noticed when the number of tablets he added for pain relief increased. It made me uneasy.

During our regular visits to physicians, the initial question was often, “On a scale of one to ten, how’s the pain?” Len might answer, “Nine.” Compression fractures in his spine were the apparent cause, but I was dismayed and embarrassed by his admission.

I’ve read that many people are ashamed to talk about pain, whether it be a passing headache or something more chronic. But those who make the effort to describe their pain in some detail, a study found, were better able to cope with the pain thereafter.

I suspect this relates to emotional pain as well.

Some time ago, I had a scare, arising from a routine physical. My doctor ordered an ultrasound, then an MRI. Then, of course, I spent a week waiting for results.

I made the decision to share this information with no one, rationalizing that any disclosure would be premature. But my inner turmoil belied this determination, and when a close colleague asked why I seemed so distracted, my story poured forth. The next day I told other intimate friends. That evening I emailed my kids, giving them the details.

The reduction in stress was palpable.

Soon the reassuring news came that all was well.

Why the initial reluctance to tell anyone? Was I shamed by an old parental message that illness was in some way a punishment for wrongdoing? What better defense mechanism could I have than to hide this presumably moral flaw of not being the person Mother wanted me to be?

Well, there is bound to be a next time. I hope my recent experience will finally silence my childhood script that illness is somehow shameful and to be denied. Unexpressed fears, and pain, can loom larger than life. Giving voice to them not only opens the way to receive loving support but lightens the step and makes it easier to breathe.

 

 

 

22 thoughts on “The Shame of Illness

  1. You described “ the hiding” so perfectly. Perhaps in the past one reason for this was that there was so little one could do but “wait and see” which, coupled with different expectations of privacy made silence a societal expectation as well as a parental value… contrast that with the fact our government through CMS now mandates that hospitals monitor and relieve your pain as a condition of participation in the Medicare / Medicaid programs !

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    1. Diane,

      So, does this represent an important shift in hospital practice? I remember stories, perhaps thirty years ago, about even moribund patients being denied sufficient pain meds because of policies about preventing addiction. True?

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  2. Why haven’t we discussed this topic before? And there’s the opposite side of the coin: instead of shame, pride. What about people who believe that good health (lack of disease) is a result of good living or good genes or a reward for good habits like exercise, or discipline or eating only good food?
    Likewise longevity for the same reason — somehow you can’t help feeling that it’s some deep force. or because of something you’ve done well. Such thoughts were in my own mind as I reached 90 years last August, even encouraging a big party, 60 relatives and friends for a splendid lunch at a perch over the Hudson. An act of self-celebration that I would never remotely thought of at 69 or 79 or 89. But now the issue was longevity — an act of survival –that was different.

    ‘As usual, I’ve turned things around for my own purposes. But it’s part of the same picture. Love and highest greetings, Paul

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    1. Dear friend,

      So happy to hear from you once again. When I am questioned about my longevity, I often quote another elder who wrote that the secret to her long life was to never make left turns and to make her bed every motning. I follow those rules as well.

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  3. My father was a well known and beloved pediatrician wth his office in our brownstone house in New York City.. I had my adenoids out at home (!) and came out of the anesthesia saying (apparently) “I must be good. I must be good”. I have always wondered WHY???Did I feel I had to set an example?Vivian

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    1. Vivian, a fascinating memory, so vivid all these years later. No doubt your understanding of the meaning of those words, even though you pose it as a question, is what you carried with you throughout life. At least, that is my educated guess.

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  4. Thank you, Bea. As always, this is a thoughtful and important essay about another aspect of being human.

    I look forward to reading and thinking about your essays. This one touches me esp. now as I anticipate shoulder surgery after traveling to Japan this month. And my sister, basically a shut in, is scheduled for hip surgery the day I leave for Japan!

    I emailed your essay to friends including my sister. I hope people will read and listen and act on your experience and insights.

    Hugs, Harriet

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  5. Hi Bea, I can truly relate to your article about illness. I’m usually very reluctant to discuss aches, pains and sick spells. They seem to be part of the “golden years.” Like you, some of this probably relates to showing vulnerability. I think additionally it relates to not wanting to bore people with all of these things or seeming like a whiner.

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    1. Carole,

      So, a question: are you bored or annoyed when a good friend tells you about their illness? Or even just their aches and pains? I suspect (and not just because you are a health professional) you become interested and even suggest avenues for their getting or feeling better if you have ideas to offer. You want to be helpful or at least commiserate. An important human connection gets made. Maybe you, like me, grew up believing “whining”, acknowledging pain or illness is somehow shameful. Maybe?

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  6. Hi Bea,

    You are, simply, the most thoughtful and insightful person I know.

    May I just catch you up for a moment? I had eye muscle surgery in Boston three weeks ago and it went well. No more double vision! It’s like a miracle. Sure, there’s some recovery (eyes very red for 2 months, the sutures rather scratchy until they dissolve), but easily dealt with in exchange for being able to see well. Someday I want to tell you more about how I identified the surgeon in Boston (in short, he married a former client, who is also an eye surgeon, and he is known as The Man in this field). It’s quite a story. As to my achy shoulders, neck and back of the head, that seems to be caused by polymyalgia rheumatica and is treated by a rheumatologist with steroids. That pain is greatly reduced to the point I am not bothered by it. So, my news is good. I even shot an 80 out here in Scottsdale, AZ (here for a week with Nancy) yesterday – I know you know that makes me a happy man! 🙂

    Would love to hear how you are doing if you get a chance. Was relieved to read that your ultrasound and MRI went well.

    Bill

    Sent from my iPad

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    1. Bill,

      What a beautiful story. Your good news becomes my good news and will carry me thgough this day in good cheer. A longer personal email soon to follow to catch you up my life. I miss our former interactions, but that is the way of the world.

      Bea

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  7. As usual, an interesting essay. This certainly rings true for how illness was dealt with in my family. The details were often not discussed unless it became quite serious, and then with little information.

    Liked by 1 person

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