British Liver Trust
12,506 members6,143 posts

Liver disease and embarressed

Still in the midst of all this fun but somthing struck me today, trawling through Facebook and cancer has 5 mile runs, epilepsy purple day, heart foundation charity days but not one mention of liver disease / run / cake stall etc. I know a lot of liver issues are self inflicted but when you break most down what isn't...

Heart attacks - beer / smoking / bad diet

Cancer - smoking / not enough exercise etc

Epilepsy - not sure on that one

My point being is there Appears to be a stigma with liver disease and it's sad to see .... once i feel better and consider well enough to be taking in pubic I will question Facebook etc

That's unless I'm missing some outdoor concert in aid of liver disease or something... moan over for now

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I hear you but I have actually got a shed a outdoor storage unit and a bedroom full of donated stuff to do a sale for liver disease it's about us making a difference and getting it out there as well and to stop being embarrassed. I have found that people once they have received a transplant move on with their lives which is fair enough but we can't forget that the transplant isn't a cure but a treatment and we could deteriorate again at any time and educating people is what we should be doing as well 😊

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Lets face it, livers just aren't sexy enough!

I suppose in some respects you are right. If liver disease is mentioned anywhere in the media its usually associated with negative connotations - drink, drugs, obesity, unsavoury sexual practices, that sort of thing. When you say to someone, "i have liver disease" or "I have cirrhosis", what's the first thing they normally say? - Was it drink related? I didn't know you had a drink problem?

There is a general lack of awareness about liver disease amongst the public outside of those connotations. All they see is those self inflicted stories. Empathy can therefore be somewhat difficult to muster. The myths need to be dispelled and that empathy built. As Jojo says, that comes with education. Look at AIDS, when people viewed it as something only gay men caught they weren't that interested. However, when it became clear that wasn't the case and the true devastation of the disease came to light attitudes changed.

That awareness is also the key. Everyone's heard of cancer. Everyone knows it can affect everyone and understand the risks and consequences. With liver disease it is sometimes seen as just a bit of a joke. I'm not sure many people fully understand its seriousness and the devastation it can cause.

So, you may have a bit of a point.

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👏👏👏.. exactly what i have been saying myself. I have contributed to BLT and also to QEHb, as i feel that is my way of saying thank you for all the hard work.

Yes totally agree with the stigma..liver cirrhosis =alcoholic. I must admit yes that was my cause ; no one did that but me yet i look back now 10 yrs on and realise how very little help or support there was at the time. I drank to escape the 24/7 anxiety from an abusive last 4 yrs of marriage .

I agree with what jojo said..i would love to go out and educate people on the causes of any liver problems, and yes i too feel embarrassed. Very good point raised 😊

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I don't consider my liver disease my fault. I know plenty of people have it from alcohol, but alcohol is not only socially acceptable but is socially expected. In the USA it's called "Happy Hour" and beer commercials are all over TV during sports events. We also have drug commercials on TV, but they don't advertise how bad these are for your liver. And Hep C? I was a nurse for many years and had exposures. I came of age before universal precautions and the common use of condoms. How would these be my fault?

In my case I have NAFLD that appears to be NASH. From my diet? Maybe even from taking hormones. As for my diet it was better than most of my coworkers. I ate extremely well for many years. When I hit menopause everything changed I started rapidly gaining weight and nothing helped. Eventually I gave up and ate what I wanted. Now my liver is shot. Who knew? Not me.

If it happened to me it will happen to many more. It is the next epidemic. Once more and more people get it from "innocent " behaviors...like eating... there will be more 5k runs. Hopefully there will be some lawsuits as well. Food companies put corn syrup in everything they sell. At least that do that in the USA. Fat Americans are being fed food full of corn syrup and salt, meat full of antibiotics and hormones. And those animals bred for eating are consuming things they shouldn't like M&M candies. The only true way to eat healthy here is to live on a farm, but even then you'll be contaminated by your neighbors' pesticides.

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I have never been embarrassed, I have faced lots of questions as most people I meet could tell you where the liver is, I love to tell people about the liver and my transplant, and getting them to talk about organ donation.

I am involved in a few ways at increasing donation awareness and getting people to talk about it, that is my ongoing task to help those in the future.

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Cirrosis and stigma; you are right about that- sometimes I find myself keeping my diagnosis open from friends and family. It appears I am the one and only responsible of feeling this way, it could be out of guilt that I knew it could happen but could not imagine ever happening to me. Or to some maybe the abuse, both mentally and physically our families endured during the binges- with some exceptions.

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hi i have pbc and wen it gets mentioned in a conversation i find myself saying before its said i don t drink its non alchoholic type but u always get the yeah as if look

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