We are putting together a new page about telling people about your, or your loved ones, condition.
We know this can be worrying for many people and we would really like to include some short quotes from people who have already been there.
It could be about telling friends, family, work, health care professionals or anyone else.
Please add your quotes in the replies below.
🙏Thank you!
What other people think about my condition is none of my business!
There is no shame, so we chose to ignore what people 'might' think. We didn't tell anyone except close family until he had a life threatening bleed. Then, we wanted our community to pray for him, so we broadcasted it and it gave us much comfort and support. We just had one nosy Parker who rang my brother in law and was mentioning about us being a "family in denial" etc so I rang his family direct and said we were under a good medical team and that I had enough to deal with, without them sending rumours and idle chat. Never heard a squeak more, and they've been very kind to us.
Apart from my husband and best friend, no one knows ... not because of shame, but because my health is no one's business
My friends and close co-workers are aware of my medical situation, particularly because there are times during the year when I need to be absent for various diagnostic tests. For me, this illness is just another part of my life.
Illness is a personal matter. I know that some people with other chronic conditions, such as multiple sclerosis or heart problems, choose not to disclose their health issues. I'm not sure if it's socially acceptable to discuss chronic diseases, especially something like liver disease.
Why is it not socially acceptable.?No wonder some folk never seek help,when they desperately need some support...
For any condition, not just liver disease..... Folk should be free to speak out ,without fear of judgement,if they feel comfortable with doing so.
Sorry I've gone of the main issue there !!!
Chris
The comment about whether "it is not socially acceptable" is not a statement; it is more of an open question.
Many people, in my opinion, do not want to make it public that they suffer from chronic liver diseases, and I think it is somewhat stigmatized.
As I have mentioned, everyone in my personal and professional circle is aware of my condition.
Following with interest whilst searching inspiration!
Hi I am an alcoholic and my liver condition is down to some very bad decisions when I was younger, although when my liver gave up I had nothing but good will from everyone that was told. You will be surprised at people, yes you have the, you deserve it, but just be sorry for people that have no forgiveness. I haven’t drunk for 20 years and have a new liver .
Stay safe All
Dogbot 🐶🌈Dave
Lovely to hear your story Dogbot! I'm glad you got some empathy in your diagnosis. We sometimes make decisions which can be bad and affect our health but we are only human and an addiction can be a terrible thing to deal with. Well done to you for going through that tough journey, you are strong!
✌️❤️☺️
I’ve told people who are close to me other than that what’s the point of telling others it’s my business.
I think the golden word here is, “Empathy”.
Liver disease in all its forms doesn’t just affect the individual, the whole family can become involved and affected. That partner/spouse who stands by their loved one can also feel emotional and feel lost. This is particularly true in the case of HE (Hepatic Encephalopathy). Here the partner/carer can feel alone because no one understands what they are having to go through. A local GP may know of the medical condition, but won’t be there when a patient suffers an HE episode and kicks off.
Children too can have problems. Just being able to talk and share their experiences with others who understand can be a form of stress relief.
I have a friend here where I live who suffers from anxiety issues. She used to attend a local mental health support group. Following her liver transplant due to PSC (Primary Sclerosing Cholangitis), she found that no one else within the group could relate to the liver transplant, so couldn’t understand her issues or how she felt. She felt alone which only added to her anxiety.
I started to go with her to her meetings just to offer her that support. It was reassuring for her to know that there was someone who could relate to what she had experienced and been through.
So, sharing experiences can be reassuring to others. You only need to share things that you are comfortable about sharing.
Being a support group, were are here to help and support others. For many who have alcohol-related liver disease, one thing we all have to do is to learn to love ourselves again. Why not share that love by helping others?
To be honest I don't care who I tell that I have cirrhosis, I always use it as a teaching point. The usual reply is "I didn't know you were a drinker" I tell them that I'm not and never was. I tell them about NASH, AIH, NAFLD and viral Hepatitis. I tell them about the various functions the liver performs, I tell them about a good diet and exercise.
To be honest, I'm probably worse than an ex-smoker, which I also am. 😂
I don't really have any quotes....I have told some family and friends, but haven't gone out of my way to broadcast it (I haven't post it on Facebook as a status!)
But those that know and love me are very proud of me and I'm proud of me too!
Bad choices and addiction, can happen to many...... it's what you chose to do about it !
🐈⬛❤️
There is so much Stigma surrounding Liver Disease, people “assume” alcoholic. The stigma needs stamping out and fast!
There are so many sufferers of this awful disease….not just the patient but their loved ones too, we all need to stand together and fight.
My husband recently lost his brave battle, I was right by his side every step of his journey, he would not of given up on me and there was no way I was giving up on him, Id do it all again if it would bring him back 💔
Awareness really needs to be accelerated, people talk about cancer, heart or lung disease, we need to spread the word by talking about Liver Disease, knowledge is power
Couldn’t agree more with WildHorses101 and so very sorry to hear your Husband lost his courageous battle with this awful cruel disease take Care ❤️😘xxx
It is so hard as anyone who is diagnosed with Cirrhosis is already labeled because of the stigma about cirrhosis. I believe it is a matter of time that it will begin to change due to the higher incidence in obesity that is occurring now. And childhood obesity rising. No longer will people think just “drunks “have it. Which is such a stereotype that people have about the word cirrhosis.
As for telling people at first I was scared worried and reluctant to say I had cirrhosis. But now 7 years on let people think what they want.
I share my story of cirrhosis because I want to educate people that not everyone drinks alcohol that gets cirrhosis. My last hospitalization 2 weeks ago for heart failure the resident doc took my history asked about tobacco use alcohol use and I told him I have only had 2 beers in my entire life. So I am reviewing my chart and I see that he wrote
“Pt states only 2 beers entire life “ but puts an ! (!) In parentheses. I’m like why did he do that as of today I still don’t know what it means . Did he think I was lying?????
We will always be judged until the public and medical people are educated.
I'm still in the early stages of an official diagnosis but those who know about it tell me "but you don't even drink that much, how is your liver bad?" It's easier to just say that I have an autoimmune condition that is affecting my liver so it stops all the awkward questions.
It’s a very difficult thing to do to admit publicly that you have cirrhosis of the liver. I have cirrhosis and have been struck by the stigma associated with the disease. I suppose it’s due to the fact that it’s associated with alcohol abuse (mine was) but know from the forum that there are many whose condition is due to many factors, many beyond their control. I’m still perplexed at societal attitudes to alcohol. It’s heavily consumed, heavily promoted and now I don’t drink have noticed there is a stigma associated with not drinking too! It’s bizarre that when someone then becomes addicted, which given the substance is highly addictive is not infrequent - then society takes such a dim view. Equally strange is the general acceptance that people find it hard to reduce their alcohol intake…take a look at all the advice columns in the daily newspapers around how to cope with Dry January or Sober October, but yet this is not perceived as ‘addiction’! I’m very careful who I tell. My family and close friends obviously know as they supported me when I was originally diagnosed and very unwell. Beyond them, given I’m very well now and no one would guess - it’s very much on a needs to know basis because of the misconceptions and stigma.
i have told friends that i have damaged my liver (13 kpa downto 11.6) and im not drinking .They admire me andencourage me to carry on looking after the organ.So it makes sense to tell them if they are curious or to prevent them asking qus
I spent 20 years of not telling anyone I had liver problems apart from my family and 2 very close friends. Didn’t even tell work. Over the years it got worse and the year before last I told my supervisor at work as I felt so unwell. I was then referred to kings for transplant assessment. Before travelling to London my daughter asked me if she could put up a post on Facebook and tagging me in it, it was such a lovely post saying how proud she was of me and everything so I said yes. Our facebooks are private and friends only, everyone who commented was so nice and friends from my school, offered my children a place to sleep, fed and looked after if they needed it when I have my transplant. The only person who has made me feel awkward was an HSA at the hospital who said to me…. Oh you need a transplant, is that because of drinking too much. I was shocked that she could ask such a question and that she presumed it was. My problems were not caused by alcohol but if they were I feel she could have triggered or upset me and any people whose liver problems were caused by alcohol. x
When I was first diagnosed with End Stage Liver Disease - Cirrhosis, I didn't tell anyone except for close family members who lived with me. I didn't feel the need to tell anyone else, because the diagnosis was up and down. There was still hope that I could somewhat heal.
However, my liver health went down so fast that my transplant evaluation was fast-tracked and real conversations needed to happen surrounding my possible death before, during or after OLT.
Once I was wait-listed, I explained everything that had contributed to my personal cirrhosis diagnosis and people were very understanding and supportive. I shared about different forms of cirrhosis, how people can protect their own native livers and lots of information about the hundreds of processes that the liver is responsible for.
I have now been transplanted and feel very lucky. I share even more about donations and how grateful I am to my donor and their family ❤️
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