Do you tell friends / family

[Bucket13]

I was diagnosed with liver cirrhosis 2 weeks ago. Still in shock as caused by taking azaphoprine for my ulcerative colitis. Anyway, I haven’t told many people only close friends and no one from work. Then, my partner told his mate down the pub, now I feel really upset and can’t believe he told someone (who is a gossip) about something so private without my consent.

[Kristian]

Easy response to this one. Having cirrhosis is nothing to be ashamed of, particularly in your circumstances. Shout it from the roof tops and stuff anyone that thinks any less of you because of it. That's their failing not yours. Besides you can then glow in that warm fuzzy smugness when you put their misguided notions right 😆😆.

I know that sounds a bit flippant. But, by doing this we help raise awareness that cirrhosis has many causes. Most of which we don't control. Just a bit of bad luck.

I never really had any issue with folks knowing I had cirrhosis. OK, I didn't shout it from the roof tops, or volunteer it in casual conversation. But, if it was the reason I was doing something or couldn't do something then I told people that's why if they asked.

Hope thats at least a little helpful.

[redpoint72]

Hi there,bucket.Having cirrhosis is nothing to be ashamed of, in ANY circumstance.

Don't let anyone tell you any different, all different reasons behind being diagnosed with it.

Never feel ashamed.

My best. Chris

[Pasturesnew in reply to redpoint72]

You wouldn't mind people knowing if say you had broken your arm, would you? Cirrhosis is a condition/illness you shouldn't be ashamed of. You may need people close to you to talk to so let them know and then they will offer you support and love. I don't mind who knows if I'm judged by it, I don't need them in my life anyway.

[Ewife]

I agree, there's no shame whatsoever. Prescription meds were a contributing factor to my husbands cirrhosis and I think there needs to be more awareness about this. In his case, we didn't realise the potential for damage and consequently didn't make the lifestyle changes he should have done when taking meds.I get how you feel though, you will probably find you just needed a bit of time to process the diagnosis yourself before being ready to have everyone know. However, what's done is done. You're partners probably struggling to process the diagnosis too - and after all, what are friends for if not to help you both through difficult times 🤗

Atb

Ewife

[Hidden]

I don't like revealing my personal information to others, I find people discussing my personal medical circumstances a violation, I would have had quite angry words if it were my partner, I would feel a sense of betrayal.

It has happened to me before, my landlord ridicules others, when I thought I had covid, I told him, to avoid him breaking my isolation and he went around telling everyone, ridiculing me and talking rubbish about me, even denying the official statistics.

Cirrhosis is not something I feel ashamed about, jury is still out about how I got it, my father had it, he was an abusive alcoholic, I learned to do the opposite of him in my life. My GP, consultant etc. speculated he might have had it not because of his alcoholism, but because it is hereditary.

Over the course of many years the story changed, first I was skin and bone, then I was told to increase my weight, eventually got to a healthier weight, by then they started telling me it was because of being overweight, nafld.

I took care of my body, ate healthily, didn't drink, didn't smoke, didn't do drugs, low sodium etc. gym 6 days a week, and yet I ended up with liver cirrhosis just like my biological father, cosmic joke.

Kind of a shock back then, but I learned to accept it and as my health deteriorated I accepted my inevitable fate (just had a liver transplant and a new lease on life 😀).

Yes there is some stigma, everyone assumes you are an alcoholic, which is annoying if you're not, but none of their business.

One day an ambulance came, had a problem with my ascites and he to be rushed to the hospital, my landlord told everyone my personal circumstances, I was discussed throughout his circle of friends, with the neighbours, people I didn't know, not something I appreciated.

For someone to discuss my personal medical information, information that is sensitive or revealed in private or confidential circumstances is a violation and breaks my trust.

Not the same as me revealing information in the forum willingly or sharing, it's the feeling of betrayal I guess.

[Bucket13 in reply to Hidden]

thank you for your words. Your story is inspiring well done you for taking care of your body, but I was sad to hear the cosmic joke. Life is never easy but you sound like a true warrior and im so happy you now have a new lease on life.

I do feel betrayed by his trust of telling others whilst we are still unsure of the diagnosis, what stage and how long I have to live as we are still waiting for the consultant to get back to us which as a duty of care is disgusting leaving me not knowing what my future holds.

[Ewife in reply to Hidden]

Interesting thought, the hereditary speculation. My husband Dr's wonder if he was pre-disposed to Cirrhosis, likewise, jury still out on the full cause of his condition. It doesn't seem without chance that he lost his Dad recently who had idiopathic Pulmonary Fibrosis (aged only 71) - he had never smoked, never lived excessively, never worked in an environment which put him at risk. Essentially, they both had unexplained fibrosis/scar tissue build up, but on different organs......

[PadoJoe in reply to Ewife]

My was definitely heredity in the DNA I was born with. Overactive immune system attacking the body internally and attacking my skin causing psoriasis. There are volumes and volumes of knowledge today that were not knows than when my grandfather and father had to deal with it.

"Ignorance" is the disease people who gossip about our problems have.

[Huggy7614]

I had a nurse once ask me, in a condescending way, what I had I done to my liver to cause my liver failure. I had great pleasure in educating her about PBC, how it starts and what it does to you.

Hopefully she will think twice before being so righteous!! There is no shame in vitro hiss, regardless of how caused.

Andy

[Bucket13 in reply to Huggy7614]

thank you for your reply

[Yellowsydney]

I never talked about my liver disease, NASH cirrhosis, they only people that knew I was om the transplant list were my husband, children, my mum and one really good friend that I needed to look after my daughter when I got the call, they were all swarn to secrecy. Not because I was ashamed of embarrassed but I live in a small village and didn't want everyone knowing and the constant questions and sympathy. I didn't feel ill, had no symptoms so nobody realised I was so sick. Two nights before my transplant I was at a big dinner with hundreds of people that knew me and nobody realised. After my transplant everyone was shocked and couldn't believe it. Now I shout it from the rooftops, wear t shirts with I've had a liver transplant, carry bags with it on, have done newspaper interviews about liver disease and transplant, so I can spread awareness that not all liver disease is caused by alcohol, hopefully to stop the stigma.It is your life and if you don't want anyone knowing so be it, I would not have been happy if my husband has told his mother or anyone else.

All the best for the future.

Hilary ❤

[Tp807]

It's really up to you and how you feel about it. You are not expected to raise awareness of the condition or shout it from the rooftops if you don't feel comfortable with that.

I think what has already been said is correct. I can only share my own experience in that I was diagnosed with decompressed cirrhosis 14 months ago. I had 14 litres of fluid drained, could barely breath when walking and had sores all over my legs. After being admitted to hospital for over a month and loosing a significant amount of weight. About 4 stone in a short space of time it was clear u was unwell so I felt it necessary to confirm that was the case. I have only told those close to me what the diagnosis and prognosis was as it is frankly no one else's business. I got sick of people prying to try and find out what the problem was but it's nothing to do with them. It would help you to tell someone so you have a support network and someone you can talk about it with, in particular how you are feeling. Your worries and concerns and for advice.

Over a year on I am glad with my decision not to tell everyone. I feel remarkably better and have responded well to medication. I haven't drank alcohol and people have commented how well I look, even if sometimes I don't feel it. I didn't want people looking at me like yh sick friend, particularly with liver disease because whether we like it or not, there is a stigma and people form their own opinions.

It's up to you. I found telling a small set of people really helpful, those I knew could keep a confidence. Other friends. No. It's none or their business. They don't feel the need to tell me their medical history, nor do I have a right to know. It's no ones business but yours.

[buckldgl]

I had liver cancer. Had a transplant. I always stress it was not alcohol related but people just assume that.

But very different reactions from whoever I tell. I've had people wanting to know every intimate detail. I had a friend who I bumped into who burst into tears and ran off and has avoided me ever since. And everything in between.

I now try to be selective in what I say to anyone but I'm at the stage where I've lost track of what I've said to who.

Unfortunately I need another transplant. But because I diet and exercise and I'm asymptomatic some people don't believe me.

So I've stopped losing sleep over what people think. I've got more important stuff on my mind.

If anyone asks I acknowledge their concern but they get the minimum to satisfy their interest.

All part of it I'm afraid.

[lippy44]

Dont worry about it, they propably dont care anyway, they just have another thing to gossip about. totally agree with Kristian, its nothing to be ashamed of, yes shout it from the roof tops, you just think of the ones close to you. think of number one xxx

[Mick1414]

Hi Bucket, you should not be ashamed to talk about cirohis as I was diagnosed in 2020, I do not drink, smoke etc. I do feel ashamed to talk about it, I to take azioprine and have Infliximab every eight weeks. I have boods taken every month for my liver and waiting now to have a ct scan which I am not afraid of.

Be positve and like has been menthioned shout from the roof tops as this is nothing to be ashamed of.

[Downpour]

Hi. I think it’s easier to share a cirrhosis diagnosis if it’s not alcohol related. Mine is through years (30 ish years) of wine every evening. I never saw myself as an alcoholic and was able to stop. I haven’t had a drink since a cirrhosis diagnosis 4 months ago.

I haven’t told anyone and don’t intend to. The reactions I have had from medical staff have been enough to make me see how much I’ll be judged.

I’m a single mum of a 16 year old with a responsible full time job. The latest indirect judgement was my health insurance which I have through work. After having had bloods, an elastography scan, an ultrasound scan and a consultation, my insurance have said they’re not covering me as it’s alcohol related. So I now have those bills to pay as well as trying to explain to friends family and work why I’m no longer in the private system.

I know I was stupid drinking so much but I really don’t need reminding of that by others. As a result of this diagnosis I’m unlikely to get into a relationship again, I will find it very hard to get another job if I need to and live in fear of another bleed which was how I was diagnosed. If someone told others about my diagnosis, I would be furious but I guess once it’s out, it becomes a case of how to best deal with it and only you know the answer to that. I’ve already decided that if my diagnosis becomes known, I will lie about the cause to avoid all the judgement of it being alcohol related.

Everyones path is different so I’m not advocating anyone does the same as me. I’m doing what I can to keep my job, my family and my privacy.

Good luck.

[Stills in reply to Downpour]

’reaction from medical staff......’

I know exactly what you mean by this. A recent episode of illness and unexplained weight loss led to a battery of tests including a gastroscopy and (pending colonoscopy). Locum GP said in the 5 minute TELEPHONE call I was allotted, we must rule out liver or ovarian cancer. Lifestyle questions prompted me to say I’ve always drunk more wine than I should and an immediate huge intake of breath and disapproving tone combined with dismissive attitude to symptoms ensued!

[Bantam2]

Hi

My cirrhosis was caused by PBC and alcohol. When I say alcohol I mean drinking over the recommended amount a week and not taking day 2 consecutive days off per week. Never drank during day except if out at weekend and rarely drink spirits - mostly wine.

I have been open and honest with people if asked and tbh I have had a really positive response. Most of my friends and acquaintances in pub were extremely interested in the drinking side of the condition and were taken back when I told them the consultant said it wasn’t necessarily the quantity I drank although it was over weekly limit regularly. It was more that I wasn’t having those 2 or 3 consecutive days with no alcohol and giving my liver a rest and time to recover. They were also shocked at just what an important organ your liver is and how much your health is affected if your liver is struggling and how amazing the liver is at repairing itself if you allow it to.

Everyone I have spoken to has said it’s been really educating for them and has made them think about how they treat their liver. It’s amazing how many people admitted to drinking too much during covid and that they drink more at home now that they did pre-covid.

I agree there is a stigma associated with cirrhosis and lots of people’s posts straight away point out it’s not due to alcohol in case judged or maybe people won’t be as sympathetic.

If you have cirrhosis caused by alcohol it doesn’t necessarily mean you drink from morning until bed. You’re probably someone who has a job, drinks in the evening, didn’t give your liver a rest and unfortunately by the time you got symptoms the damage was done. My consultant told me unfortunately cirrhosis due to alcohol is on a steep rise and is going to be a shock diagnosis for a lot of people in the future. I understand if people don’t want to share with others but you will actually be doing them a favour.

I wouldn’t lecture anyone but what I would say is enjoy the fact you can have a drink if you want but don’t forget your liver is not indestructible and giving it a rest a few nights a week means you can carry on enjoying drinking.

Hope this resonates with anyone where alcohol was a factor x

[Stills in reply to Bantam2]

good points

[redpoint72 in reply to Bantam2]

Well said bantam. Yes,it certainly resonates!.

Chris.

[ballie52]

I think most people don't want their personal medical history being talked about by others especially when people speculate about the cause if the word cirrhosis is mentioned!Even in the medical profession believe it or not sometimes it happens!

I have had Hep C and liver cirrhosis and here in the UK have had that experience even by medical staff who judge me before reading my history and make inappropriate comments!

My Hep C and cirrhosis was caused by my husband being vaccinated as a child in Egypt against Balharsia which is a parasite in rural areas of Egypt most Egyptian people got contaminated by the Authorities using the same needle for multiple people in rural areas that in turn caused the biggest Hep C contaminated population in the whole of the Middle East and African countries..to cut a long story short he never knew he had it until after we got married and started to get liver disease issues he went on to have 3 liver transplants and is doing OK

I caught Hep C from most likely using his razors to shave my legs and went on to develop cirrhosis!

When people see the the word Hep C they automatically think drugs and you are stigmatised even by ignorant people who know nothing about the disease or how you potentially caught it!

Yes I get it 100% about feeling angry about a close family member telling others your medical history as sadly people always assume it was lifestyle choices and that's not always the case!

Anyway it shouldn't matter how anyone has developed cirrhosis it's and illness not a disease but sadly most don't see it that way!