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Post 8: The shame of cirrhosis.

For most people, the diagnosis of a serious, life-threatening, chronic disease is a very scary experience. But after getting that type of news, most people are able to gather comfort from friends, family, sometimes even strangers. When they tell those friends, family, and strangers about their diagnosis, the first reaction people usually give is a hushed, “Oh, I’m so sorry to hear that.” That might be followed by a hug; A comforting word or prayers; An offer of help, support, or advice; But with cirrhosis, sharing our diagnosis with others is often, sadly, a drastically different experience.

After the unexpected shock of learning that I had cirrhosis in 2016, I quickly learned to recognize the signs and symptoms that meant I needed to call my doctor. I learned to recognize which foods and drinks had hidden sodium in them as just one example of what I needed to know. Unfortunately, I also learned to recognize “The Look.”

I would guess that every single patient who has been diagnosed with cirrhosis knows “The Look.” It’s so common for me, that it could almost be comical, if it didn’t regularly make me feel so defeated.

The first time I experienced “The Look,” I didn’t even actually see it. My mom had taken on a part time job as a waitress, to help cover my mounting medical bills when I had to stop working. Her regular customers knew that I’d been getting seriously ill over the past 9 months. After I had a diagnosis, she finally had answers to give when people asked how I was doing. But when she told people that I’d been diagnosed with cirrhosis, instead of the comforting words or sympathetic understanding that she’d expected from customers that she considered friends – customers who knew me – she heard things like, “Oh, I’m sorry, I didn’t know she was an alcoholic.” Or a blunt, “How much did she drink?” Almost accusatory statements, with a look that said this news was unfortunate, but that obviously cirrhosis is a disease that I caused myself. She was shocked! She’s been a caretaker for many people over the years, and had never encountered responses like this.

I quickly realized how few people understand liver disease. The first thing anyone thinks of when hearing the word “cirrhosis,” is alcoholic. Every time. A few people, especially older people, also associate it with Hepatitis C. Absolutely no one I’ve ever met has heard of things like hemochromatosis, Wilson’s disease, or autoimmune hepatitis. Very few people have even heard of fatty liver, or NASH. Everyone just thinks of cirrhosis as a disease for old men who’ve spent their years chugging away on a whiskey bottle.

I learned to expect this reaction from “regular” people. Because I had to admit to myself that I didn’t know any of these things either, before my diagnosis. So, as weary as I started to get, when time after time I’d get that look, that was part accusing and part pity; That look that said, “Oh, I’m so sorry, but it’s your own fault, you know…” - I tried to be understanding, and continue patiently explaining that cirrhosis is the end stage of a process of damage to the liver, that the damage can come from over a dozen different causes, that everyone with cirrhosis isn’t an alcoholic, and that even if they DID get cirrhosis from alcohol use… does that really even matter much?

What I didn’t expect was to continue getting this type of uninformed reaction from people in the medical community. My primary care doctor wouldn’t even believe me that my cirrhosis wasn’t related to alcohol, until he had written confirmation from my out-of-town hepatologist. I dread going to the ER, because it always, always starts with “The Look.” I’m in a room, lying on a bed, the nurse comes to do vitals, and get basic information. They ask for a list of known health conditions. When I get to liver disease, there’s an abrupt change of tone as they ask “What type of liver disease?” I take a deep breath, and say, “Cirrhosis.” Then, The Look, and the same question, without fail, every single time: “From drinking?” They never ask something less loaded, such as “Do you know the cause of your cirrhosis?” It’s just always this sudden shift in their opinion of you, that look that says “Oh you’re one of those people,” and an instant judgement call that whatever problem you’re being seen for that day – even if it’s not related to liver disease at all – that it’s probably something else that you yourself have caused; from bad judgement, poor moral character, unhealthy choices. The Look tells you that you’ve been judged and found lacking. Even when I tell them that my cirrhosis diagnosis has nothing to do with alcohol, they give each other a “That’s what they all say” look, and continue asking things like how much I drank, do I still drink, when was my last drink? At first, I thought maybe this was just me being paranoid, born of the frustration at explaining a confusing diagnosis. But everyone else in my family has seen it too. And I’ve heard the same story from so many other patients. It’s incredible, how pervasive and consistent it is.

This attitude, this idea that cirrhosis patients deserve their disease, the look of shame that we get when we say our diagnosis out loud – I know that many, many other patients feel a stigma from this too, which discourages us from speaking up about our illness. It causes us to keep quiet about our diagnosis, often suffering in silence instead of asking for help from our friends and family. But it also causes us to be less pro-active with our own healthcare, shamefully stuffing down our questions, when our doctors treat us as though we are to blame. Because, I think that most people who face a life-changing disease of any type have a moment or more, where they wonder what they did to deserve this fate? Was it skipping the gym and regular checkups, or was it overindulging in foods or drinks? This makes it even easier to fall for the shaming you get from your friends, family, neighbors, and even doctors.

Sometimes I don’t know how it can be true, that here I am, living with a serious chronic disease that has the potential to kill me. Even on the good days, that knowledge adds a heavy weight to my life. Yet… My life is still beautiful. Because each day, with purpose, I create a life that’s beautiful. But oh, my… How much more beautiful life could be, if I didn’t have the added weight of “The Look,” and the unnecessary stigma attached the word cirrhosis. Which is why I’m beginning to work so hard to change that.