Asking questions: Talking about liver... - British Liver Trust

British Liver Trust

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Asking questions

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4 years ago•8 Replies

Talking about liver cirrhosis is not easy. In my RL it's almost impossible, as it's highly stigmatized (that is my personal experience).

So, I was happy to find such informative message board. I was able to learn a lot, only by reading.

But recently it's changing. I've received PMs - I don't have a problem with getting them, I've written some myself - but it's the content that's annoying.

Health anxiety is one thing. But everybody who can read can also search for some simple numbers.

People with perfect LTFs asking if they have liver cirrhosis annoy me. And because I keep getting all those questions "help, my AST is 10, will I die soon" I would like to know the motivation. It's it boredom? Do you keep asking those questions on other message boards as well? Like, "today I couldn't finish my 20 mile running route, maybe my heart is weak"...?

Can't you imagine how painful it is being really sick?

If you're bored: pick up another hobby. Like, do volunteer work for sick people. Then you'll find out first hand what ascites and jaundice look like.

Or you have some serious mental issues, then seek help, but I don't think you should watch for a hepathologist.

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Liver disease

8 Replies

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4 years ago

I think you have said what many must be feeling so thank you.

I have only just joined the community and these type of posts by those with normal objective test results were some of the first that I read. Initially, they made me upset and angry. I was not even going to give this resource a fair go as I was so infuriated.

My thoughts were, when they ask if a blood result value is normal for example , it seems more than likely that they know it’s normal due to the time they obviously spend googling, so what’s the motivation behind asking?! I also can absolutely understand how one clinical test could potentially be inaccurate, but not the entire clinical picture involving multiple tests and health care professionals.

I would always support someone in distress and panicking, as numbers and tests are confusing. I would not want to discourage those with genuine confusion surrounding results, even if they are normal from seeking support but some of the posts are just not sitting well with me. I would direct them back to their doctors.

At first I thought that these posts were cruel and demonstrated sheer unkindness or were intentionally inflammatory. To say these things to a community who know exactly what it’s like to have this disease, carers and family of those with the disease, or having lost someone and those nervously waiting for results, seems unkind.

Now I can only reconcile it by thinking that I don’t know the whole story behind these posts and they must be have their own tortures to deal with. I need my energy for positive things and to stay calm.

Juliettebdc4 years ago

I think this is a combination of things, the past year and a half has been very difficult for most people and many turned to or increased their consumption of alcohol to cope with the pandemic and are now fearful that they will pay a terrible price. Alcohol use is up, anxiety is way up, and some have fewer distractions than they used to which may result in intense focus on one’s own fears. I imagine this is quite frustrating for some of those who are here coping with their own diagnosed cirrhosis. Anxiety is certainly its own hell to deal with but that does not make it acceptable or appropriate for people to be privately messaging you to assuage their own fears about normal LFTs and I’m sorry that’s happening to you. It may be worth reporting those messages if there is a way to do that.

TT-20184 years ago

I couldn’t get into shoes when I was diagnosed with end stage, decompensated cirrhosis because the odeama made my feet too swollen!

• in reply toTT-20184 years ago

I wonder just how worried these worriers of normal scans and tests would be if they were to have cirrhosis? I know it was terrifying to hear my late husband told you have liver failure and 1 more drink will kill you. I really don't think they would have the strength to cope. Cirrhosis sufferers and those going through the transplant process deserve complete respect living their lives to the fullest they can and with such great dignity.

4 years ago

In response to a previous reply to the original post, all potential illness anxieties are worrying and create so much negativity. I am doing my best to muddle my way through the hurdles and anxieties but there is definitely something in the power of positive thinking. Let’s all keep calm and try to focus on more positive things so that we can support one another as none of us needs it to get heated.

Has anyone tried Tai Chi? It’s not wishy washy at all and concentrates on mental focus, strength, coordination, balance to name just a few attributes. I’m relearning it and it makes such a difference to my mental and physical health. The movements can be adapted to sitting down as well as recumbent lying. I always feel better, even exhilarated and refreshed and I’ve seen the positive effects that aspects of it have on a whole range of people with different exercise tolerances, disabilities and illnesses.

Ewife4 years ago

I've noticed too that this forum gets a lot of anxious posters. I really do fully sympathise, health anxiety is a crippling illness for sufferers, I get to deal with it a lot in family members. It is sometimes frustrating and upsetting, but try to think of how genuinely terrifying it is for the sufferers......to them, the symptoms are so real.

However, I've noticed that the posts usually run their course, with the person finally being reassured. I have also noticed that sometimes the biggest worriers actually end up helping new users with health anxiety!!!!

Sometimes I've wished there could be separate forums for those actually diagnosed, but I guess there are a lot of folks out there that genuinely find this forum helpful when waiting results and diagnosis, rather than those that seem to just use it to fuel or confirm their fears.

At the end of the day, I think Liver disease can be quite a mysterious illness, difficult to diagnose, very poorly understood by general public and therefore prone to users suffering from anxiety.

Atb

• in reply toEwife4 years ago

Ewife, what a lovely reply, thank you. Health anxiety is crippling for some individuals but I appreciate the frustrations it must bring other forum members. Trust10

4 years ago

Hi Annalucia, many thanks for posting your thoughts - it is helpful to have constructive conversations in how to support all users of this forum. I'll switch your post off now due to the nature of some of the replies. Warmest wishes, Trust10.