One of my superpowers for MASH is defiance in the name of compliance

When I was a kid, I was always kind of a rebel. I didn’t respond well to authority. I wanted to be as free as a butterfly journeying back to the rainforest after summering on a warm coastal shore.

I understand now that I had what’s called oppositional defiant disorder, or ODD. I never imagined I’d one day get a metaphorical pat on the back from my doctors for being compliant. I also never thought I’d become such an obedient, direction-following patient. Yet here we are.

As an adult living with metabolic dysfunction-associated steatohepatitis (MASH), I can’t afford to slip into my former, more impulsive ways. Too many people — and cats — depend on me sticking around. So I’ve learned to listen to my doctors. But there are things doctors don’t always tell you about your diagnosis unless you ask. That’s when it pays to be just stubborn enough to get clear answers. Then there’s your well-meaning family, who often believe they have the answers and that you should hear them out. My older sister, for instance.

One of my fiercest allies in this disease, she regularly sends me TikTok and YouTube videos featuring alleged ways to self-treat liver disease. She means well. Truly. She just doesn’t study this disease like I do. I know I can’t — and shouldn’t — try most of these video-prescribed treatments. Some appear marginally legit, backed by scant or preliminary medical evidence. Others would likely land me in the emergency department contemplating an urgent liver transplant. That’s when I have to summon my ODD superpower and simply say no.

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Here’s the inconvenient truth: Other than a very observant doctor or two, nobody knows what you need more than you do. Sometimes advocating for your health requires defying advice, even when it’s offered with love.

Maybe you’ve had a friend do this: You have arthritis, and your friend insists that yoga will cure it. Never mind that your knee bones were grinding into each other like tiny geological disasters every time you moved them. They send you videos of people claiming their arthritis vanished thanks to the downward dog. You thank them — and decline their help. Your body knows this isn’t good advice for you. Maybe it will work for someone else. I don’t pretend to understand how other people’s bodies operate, and that’s precisely why I don’t offer medical advice to anyone.

Sometimes the word “no” is your best friend when navigating chronic illness and unsolicited guidance. The fact is, it’s your body. How you manage your MASH is ultimately between you and your healthcare team. Even the best doctors don’t mind “stupid” questions. In my experience, my hepatologist would much rather I ask something that feels naïve than quietly experiment with unsafe supplements or risky, unapproved drugs. That includes treatments that haven’t undergone rigorous, regulated study by the U.S. Food and Drug Administration.

This is where my “rebel without a cause” phase officially ends. I live with plenty of small but persistent symptoms of liver disease. One of the most frustrating is the loss of muscle mass and strength. I could try any number of supplements lining the shelves of my local grocery or health food store, but I know the supplement market isn’t regulated the same way food or prescription medications are. Why risk lasting harm when my liver is finally showing signs of improvement?

Sometimes, defiance in the name of compliance is the healthiest choice you can make. It may create friction with people whose opinions you value — as it sometimes does with my sisters — but if they truly love you, they’ll understand. They’re entitled to their viewpoints. They’re just not entitled to direct your medical care. If your family member isn’t a gastroenterologist or hepatologist, their opinions shouldn’t define your treatment plan.

Thank them for caring. Then hop on that mental motorcycle, zip up your imaginary leather jacket, and peel out of there.

You little rebel.

Note: Liver Disease News 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.

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