Overcoming shame and finding my new normal after an MS diagnosis

As a new doctor and mother, I felt ashamed to have a chronic disease

Susan Payrovi, MD avatar

by Susan Payrovi, MD |

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Last week, something unexpected happened during one of my shared medical visits with patients. I wasn’t expecting shame to show up.

We were deep in conversation about how a diagnosis can unravel a person’s identity and how grief often follows when our sense of self begins to slip away.

It had been a long time since I’d thought about the dark days of 2011, when I was diagnosed with multiple sclerosis (MS) after the birth of my first child. I’d gone back to work as an anesthesiologist when my son was just 1 month old and was struggling with simple tasks in the operating room. My left arm and hand were utterly uncooperative.

It took nine months to get diagnosed, which I recognize is practically record speed in the MS world. While my initial feeling was relief, it didn’t last long.

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It was what Brené Brown aptly calls the “warm wash of shame.” And I was swimming in it those first days and weeks after the diagnosis.

This was the soundtrack playing over and over in my head: “How could you be so arrogant to think you’d never get sick?” “What made you think you were untouchable?” “Why did you believe being a doctor made you immune?”

I got the diagnosis the Friday night before Memorial Day, and by Monday morning, I realized my anesthesia career was over. I was clearly unsafe to take care of patients in the operating room.

I called my boss to let him know I was quitting. It did not go well. To be fair, I didn’t disclose my diagnosis. It would take me another two years to be able to speak the words “multiple sclerosis” out loud. I was drowning in shame.

Letting go of shame

But I was lucky. I had a husband and a mother who held space for me. I had time. I had options. And I had relatively mild symptoms — enough to end a career in anesthesia, yes, but not a life in medicine. I retrained in integrative and functional medicine, which became instrumental in my own recovery.

Chronic disease is forever. As a new mom, new wife, new doctor, it wasn’t an option for me to give up and not do everything in my power to help myself. It took somewhere between two and five years to find my “new normal.”

MS forced me to live with intention. I recognized that my energy was not infinite. I wasn’t going to live forever. And no one was asking me to wear a superhero cape.

Do I feel shame now?

Not one bit; I was just an over-enthusiastic young person doing my very best when my health crumbled. MS was not my fault.

Today, I’m a mom of three wild boys, who routinely forgets school spirit days, a cook whose healthy meals are met with suspicion, and a doctor practicing common sense medicine — helping others navigate the complexities of chronic disease and find joy again.

If you’re carrying shame — whether from illness, burnout, or simply the weight of not being who you used to be — please know you’re not alone. Let’s start talking about it, in our exam rooms, in our homes, with those who deserve to hear our stories.

You don’t have to go back to the old version of you. Maybe, like me, you’ll discover the new version has even more depth, purpose, and joy than you ever imagined.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

MADELINE l NEWTON avatar

MADELINE l NEWTON

it is hard to come to realize what just happened when you get this disease but yes we go on just another way...i too had a hard time coming to grip with the thought i couldnt do lots of things that we think will always be there for us in the future whether it is in work or something else we have lost...stay strong and relize we do go on just another way of doing things...love and happiness for you and your family ...

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Jeffrey Gullang avatar

Jeffrey Gullang

Love the post Dr Susan. I am still learning to accept the new normal and removing the shame. It's been 25 years, but this post helps remind me that everything's good.

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Terry avatar

Terry

I love this. Thank you. I am one year behind you (diagnosed in 2012) and I am still finding my “normal” now that aging has really kicked in. Hadn’t thought about shame. But… yes.

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Phillip Harvey avatar

Phillip Harvey

I have difficulty comprehending the "drowning in shame" expression used when being diagnosed with MS. As far as I was concerned it was rather more a shrug of the shoulders at life's latest injustice! Straight afterwards the reaction became what will be, will be and a determination to fight the good fight for as long as possible. So far so good! Phil Harvey.

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Donna avatar

Donna

I
Was diagnosed in 201.2 I'm not ashamed I got the disease in fact I say to people sorry I'm sow I had Ms the only thing I hate is loosing my independence being able just to pick something up n go ad do a job like hoovering or going round the garden n doing a little tiding up this is what I hate my husband is my carer and does everything for me I've no motorbilty now which is horrid

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