"The most frustrating thing about being diagnosed with fatty liver or NASH is…"

Being accused of being a liar by people who always associate cirrhosis with alcohol

You have to explained what NAFLD & NASH mean.

Then you get a lecture about the liver healing itself if we would just stop eating so much. I have put on 3 stones with medication for other conditions and initially diagnosed through malnutrition.

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25 Replies

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  • I know how you feel. I am fed up being told to stop eating and get more exercise. Like you, I have multiple conditions and find losing weight a struggle. One day these young whipersnapper's will be in our position and the shoe will be on the other foot.

  • I hope they don't. I hope there will be a cure for all of them.

    However, I do sometimes wish they could live it, just for one day so they can understand.

    I don't want their sympathy I want to lose their judgements

  • I don't wish illness on anyone. However, very few people go through life without contracting some disease or other. It is only then that these judgmental people will realise that we were not telling lies.

  • I wish My Liver Doctor could feel this pain! I guarantee he wouldn't be telling his patients you don't feel pain from Cirrohos! That's chow I discovered it in the first place!

  • My liver Dr is the same! it really gets on my nerves! I am in pain all of the time! people just don"t get it

  • The liver does not feel pain but the nerve endings in the sac around the liver do as the liver enlarges.

  • My doctor feels the same way. I have been having pain for a year. Gallbladder has been removed everything else looks good . I have type 2 diabetes also to go along with the Chrosis.

  • I feel the same way, when people hear Cirrohos the first thing they think is alcoholic, and to be honest I was one of those who thought that way, now I make sure to say non-alcoholic cirrhosis of liver.

  • Me to :( my cousin died in 2015 of Chrioss,but he was an alolcholic! I have never been a drinker & I have ended up like this! I know it is wrong but I feel so angry at my cousin! He got that way coz of drink! I haven"t! he was only 36 when he died! People are so judgemental!

  • I was adopted, My biological father apparently drinked alot and died in his 40s. I'm about to turn 52. My Son is 19 and he inherited it.

  • So sorry here your son Inherited it :( I hope he can overcome it with help:( It must awful for you :( It was hard enough with my cousin,so for you to see it with you son must be heartbreaking :( & for you to have liver diease to :( you have it tough :( so the last thing you need is Judgement! I get awful pain from my liver diease :( after I eat is awful! my liver DR is the same! My Gp is brill though & very understanding :) so I am lucky! I also have liver tumors beign, but it terrofies me they could turn to cancer!

  • I understand my last scans came back inconclusive, I've been on Clinical Trial for 3 months for a medicine that lowers pressure. My Liver is unable to get blood through and it causes pressure in my veins, they could bust and I would hemmoriage to death. I doing phase 2 of study there will be a phase 3 then hopefully FDA will approve medicine. It makes me so sick and will not be released in time to save me but I'm doing this so it may save my Son, Grandkids and everyone else with this horrible disease. Tomorrow morning I go in Hospital they will insert needle and Cath and instrument that balloons and measure pressure until they get 3 of the same readings. I had this at beginning of trial and they don't get me numb because it's bad for Liver, It hurt so bad my legs flew straight up in air. They are talking to me about a Trial that suspose cto reverse the fibrosis, it's a year long.

  • I feel the same way and know if I had been a drinker I would be dead now. But my Son is 19 he is a EMT because he wants to help people he works out every day has perfect BMI. Won't even take a Tylenol. Doesn't eat junk food and his AST levels are at the level mine were when diagnosed with Cirrhosis. My daughter drinks and party's alot is 33 with 4 kids her Liver seems fine but my 11 year old Grandson inherited hiatal hernia and GERD from me and I forsee him getting the Liver Disease.

  • So sorry you are going though such a horrid time :(

  • I've gotten a similar response of ... but you don't drink ... it is amazing what people say to your face 🙂

  • And the good old favourite .... everyone knows the liver heals itself

  • Not with Cirrhosis!

  • I know that's why it's frustrating

    X

  • :(

  • :(

  • Yes my report said My Liver looks like one from a alcoholic, It's like the doctors don't believe me. I make sure I say non-alcoholic cirrhosis of liver when ever referring to my disease.

  • When I was diagnosed 3 years ago I was told to cut down on my coffee intake and protein. My last visit I was told drink at least 4 cups of coffee a day and increase your protein because I'm losing muscle mass in arms. I also never knew Cirrohos causes osteoporosis, which I now have, I'm only 51 years old....

  • Hey I know how you feel! I have been treated in the same way.I am always being told what to eat, by people who know nothing about the condtion! Drs wanted me to have a gastric band & got really shirty when I said no! I am not overweight enough! I looked into it & decided it wasn"t for me! Everybody had an option! I feel like Drs blame me for my liver diease! I am always being told by them, if you lose weight it will all go away! well I have lost weight & to be honest it has bearly made a diffrence! I have a metobic conditon, which is always being forgot about! so losing weight is hard me! I have lernt to rise above it! It still winds me up,but I don"t let it get to me like it did!

  • Awful isn't it? I have several health problems and getting one doctor to take another into account for meds is near impossible.

    🙄

  • I finished this Clinical Trial, It did not lower my portal Hypertension, it did slow my heart rate from 90+ down to 70-80. Medicine made me very sick. I'm being offered another trial that's longer, and riskier, I really don't know what to do. Doctor didn't even tell me I had severe Portal Hypertension! The Clinical Trial people were waiting for me at my appt. If I do this trial and receive placebo I risk the chance of veins bleeding. Doctor wrote in my paperwork MRI for shunt on Oct 27, If I do not participate in trial.

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