Living with chronic pain or chronic illness can bring unexpected emotions. Alongside the physical challenges they’re dealing with, many people also experience feelings of embarrassment or even shame — feelings that can be difficult to talk about.
Today, I’m very pleased to share a guest post by author Sigrid MacDonald, who explores this topic with honesty and insight.
Dealing With Embarrassment and Shame — Guest Post By Sigrid MacDonald
I was perfectly healthy until the age of 28, and, like most people, I took my health for granted. I was getting my master’s and living in Toronto without a car, so I took the subway. Up and down hundreds of steps every day, walking for miles, eating out with friends, studying late, and sharing sweet nights with my boyfriend. Was my life perfect? Of course not. Far from it, but things were good.
Then I went home to visit my parents for the summer. I was hit head-on and nearly killed by a drunk driver. He had a blood alcohol level of .23. My car went off to the junk heap, and I spent three weeks in intensive care, three months in orthopedics, and had approximately 25 subsequent hospitalizations. I broke about 12 bones, plus I had a head injury, and my face was badly cut up. I tried to go back to Toronto, but I kept collapsing; by pushing my body too hard, I developed fibromyalgia and panic disorder along with arthritis in all the joints from the bones I broke. I was non-weight-bearing on crutches for six months, and it took more than a year to walk again.
“Everything Seemed Temporary”
I never felt embarrassed on my crutches. Everything seemed temporary. People could see that I was young, and it looked like I would recover fairly soon. I had three plastic surgeries on my face, so I looked all right after a year or so. I didn’t look or feel disabled. Then, when I got the fibro, along with a chronic headache, and the broken bones turned into arthritic joints, my constant daily pain became invisible. In many ways, this was good. I didn’t have to be embarrassed about being inferior. I didn’t want people to pity me. They couldn’t see how I was suffering. They didn’t know I hadn’t had five minutes free of pain since that accident.
But I spent half my time explaining why I couldn’t function, why I couldn’t work, why I was constantly in the hospital/bedridden/or housebound; I felt that people didn’t really believe me. I thought they viewed me as a malingerer because they couldn’t see my pain. They couldn’t see my nausea, vomiting, inability to eat, and need to restrict my food until I had three stomach surgeries, which fixed some things but aggravated others. Now I can hardly eat anything that sounds yummy. I’m basically intolerant to carbohydrates, including fruit. I can’t eat most foods that are high in histamine, which is a really long list, so I’m down to eating fewer than 10 foods. I used to fantasize about guys before bed, but now I often lose sleep by daydreaming about foods I’ll never be able to eat again.
Dealing With Pain is Enough — Why Should We Also Have to Deal With Embarrassment?
Why should I have felt embarrassed in the first place? It’s a social construct. We’re not born with it. We learn to feel less than, inadequate, or not as pretty or good enough if we’re visibly disabled. But in many ways, it’s almost worse to be invisibly disabled. I will never forget one day when I was outside enjoying the spring weather, and a neighbor named Louisa yelled at me from the bottom of the street. She shouted four houses down, “What’s wrong with you? You’re 40 years old, and you’re living with your parents. You are a loser!” Talk about a mean girl.
I was devastated. I was filled with shame and humiliation, and several other neighbors overheard her shouting. I felt outraged and indignant.
How dare she talk to me that way? She looked at me, and I looked “normal,” and she made all kinds of callous, untrue judgments. She assumed that I felt much better than I did and that I could live on my own, but I was repeatedly hospitalized, weak, and sick, and I needed my parents’ help. Plus, I was on disability—you don’t get much money on disability, and public housing is no picnic. Why would I leave my parents’ house, loving and comfortable as it was, to go into subsidized housing and be alone without the support I needed?
This is also a cultural issue. My friend is from Venezuela. Her brother lived with his mother for years because of health challenges. Nobody called him a loser. It’s Western culture that says you’re a failure or a deadbeat if you don’t leave home by 25. Unfortunately, I internalized that message for years.
“Now My Disability is Visible”
Now, following a failed knee replacement, my pain levels are sky-high. I’m on a walker, so my disability is apparent to everyone. Sometimes I even need a scooter because I feel lightheaded, and I passed out many times in my last apartment. I’m living in an independent seniors residence where people are 10 to 15 years older than me, but I look just like them because I’m mobility challenged. How do I deal with this increased embarrassment?
How to Deal With This Embarrassment?
First, I remind myself that this feeling of being less than was imposed on me by society. It’s not innate. I constantly have to tell myself that I still look good, and I’m not old or broken. I have to repeatedly reject hurtful and damaging social messages. If you’re getting any of them, you need to do the same.
Second, the Golden Rule tells us to treat our neighbor as we would want to be treated. We must also practice loving kindness toward ourselves. I am frequently critical of myself in a way I would never treat another person.
Three, I’ve developed gratitude for the walker and scooter. Without them, I couldn’t walk. I’m lucky to have them. 60 years ago, I might have ended up in a wheelchair. I try to focus now on what I can do rather than what I can’t, and I constantly record and applaud my achievements, however minor. Some days, it might be an achievement just to get up, take a shower, and go back to take a nap.
I urge you, my fellow pain sufferers, to emphatically reject the idea that we should be ashamed or embarrassed of our pain or disability. We didn’t do anything to deserve it, and we are not inadequate, inferior, or less than. In fact, many of us are much stronger than most people who have easier lives because they are healthy.
More Information About Sigrid
Originally from New Jersey, Sigrid Macdonald lives in Ottawa, Ontario. She has been a freelance writer for decades. Her work has appeared in The Globe and Mail newspaper, the Women’s Freedom Network Newsletter, the American magazine Justice Denied, The Toastmaster, and the Anxiety Disorders Association of Ontario Newsletter.
In 1981, Sigrid was hit and nearly killed by a drunk driver. Her first book, Getting Hip: Recovery from a Total Hip Replacement, was published in 2004; her hip replacement was a great success, unlike the failed knee replacement she had in 2024. Her most recent book delves into that surgical experience as well as what it’s like to live with increasing chronic pain over the decades. It’s called Bent but Not Broken: Living Boldly with Chronic Pain.
Sigrid is a social activist who spent years working on women’s rights as well as wrongful convictions. For many years, she was actively involved in the Association in Defense of the Wrongly Convicted. She owns an editing company called Book Magic and is a long-time member of Mothers Against Drunk Driving, Ottawa Independent Writers, and the Editors’ Association of Canada. Visit her website at Book Magic or friend her on Facebook.
Many thanks to Sigrid for such an honest and reflective post about dealing with the embarrassment that can accompany chronic pain.
Thank you so much for reading.
If this post resonated with you, I’d love to hear your thoughts in the comments.
And feel free to share it with your friends or support groups.
Take care,
Liz.
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