Sometimes you are the best expert on your body with MASH
After years of living with liver disease, I know my body's signals well
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Most of my life has been spent as a writer, but that also means that a good chunk of my life has been spent as a researcher, too, especially when I’m writing this column every week. I will chase clouds of information across every website before settling on what I feel confident sharing with my beloved readers. I also do my best to double-check my research before I share it. I respect my editors, who have a lot of columns to work through each week, so it’s one of the ways I show that I care.
I’m not perfect. I have made mistakes. I’m sure I’ll make more. I know myself well enough to admit that publicly. And I find no shame in that, especially when it comes to my body.
Living with a long-term illness, especially metabolic dysfunction-associated steatohepatitis (MASH), comes with a lot of unknowns. I was so sick after my initial diagnosis, and things went from bad to worse in no time. Now that I’m seemingly on the other side of the worst of this illness and my liver is functioning much better again, I often worry about the chances of things flipping back to bad. I suppose I’ll always worry about potential signs that I’m getting sicker. I just know I can’t let that be my focus.
When I look back at the hardest moments I’ve experienced thus far with MASH, I am aware of the signs to watch for. For those of us living with cirrhosis, that can mean unusual swelling from ascites or edema, or changes in thinking, memory, or alertness from hepatic encephalopathy. Those symptoms can be signs of hepatic decompensation and deserve attention from a medical team. They don’t automatically mean the worst is happening, but I don’t dismiss them, either.
Still, when I tell people how I’m honestly doing, I can sometimes see the cringey, concerned look on their faces. Then I remember that the last time they heard about one of those things happening to me, I was lying in a hospital bed being told that if I didn’t find a liver right away, I might not be around another year. Their fears are understandable. It is my job to explain why they don’t need to worry quite as much because I faced those situations before, learned from them, and am still here to tell the tale.
Despite the faith I put in my doctors and other healthcare team members, I sometimes have reasons to question a recommendation based on my own experiences. For instance, I may question a medication I’ve taken in the past if it didn’t help me then, and I ask about alternatives. I have felt that way about most of the antidepressants I’ve ever taken, save for one. It’s the only one I’ve had clear success with, so it is the one I would be most likely to ask about if my medication routine changes.
That isn’t about rejecting medical expertise. It is about shared decision-making: bringing what I know about my own history to the table while listening to what my healthcare team knows from training, evidence, and experience.
Though I had a heart attack a few years ago, I don’t panic the moment I get a random chest pain. But I also don’t assume I can diagnose it myself. My heart attack happened in the setting of a gastric bleed, so I understand the circumstances were unusual. I also know that heart attack symptoms can include chest discomfort, jaw, back, or arm pain, shortness of breath, nausea, sweating, lightheadedness, and unusual fatigue. If something feels wrong, especially if symptoms are new or persistent, calling 911 is the safer choice.
For the record, if you ever experience unusual chest pain or other possible heart attack symptoms, please don’t hesitate to get emergency help. Your life is too precious to gamble with.
I do not make a habit of being oppositional, but I know that nobody has lived in my body longer than I have. That doesn’t stop me from accepting help, especially when someone can explain or show me the benefit, because pretending I know everything would be foolish.
And the last thing I want to be foolish about is my health.
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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