So a few weeks ago now I learnt I have cirrhosis (NAFLD). Like so many others, this was a complete surprise to me and I've been slowly coming to terms with it.
The hardest part though, is I'm not sure how to tell my family. My wife especially has health anxiety, despite being very fit (she goes to the gym almost every day, eats well and has a very active job) anything to do with illness can send her into a panic.
I also know how much they rely upon me for so many little things, and I'm not sure what will happen if I can no longer be there for them.
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Reglathium23
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haven’t been on here for awhile but usual thing is down to the demon grog,a few weeks ago is a short time to make any assumptions ie your not gonna die tomorrow(hopefully not now😁)calm down and get more info and replies off here,did your docs just tell you that and left you hanging or did you get some advice
Sorry to hear about your diagnosis. It is a lot to come to terms with!
Telling others is tricky and has come up on these and other forums before. Some find it helpful to share details of their condition openly, whereas others found it better to tell few people or no one.
I have parents who have health anxiety. I chose not to tell them that I have cirrhosis. In the past I have told them about other minor illnesses and, although they mean well, their stress and anxiety in turn caused me so much unnecessary stress. I know that I cannot cope with that in relation to my cirrhosis diagnosis. I have chosen to tell only a few close friends, my ex-partner and my manager at work. I am glad that I have been select in who I've told. This works better for me. I know that my parents may have to know about my diagnosis at some point in the future if/when my illness progresses. I know that they will be upset and hurt that I chose not to tell them, but it is the better option for my mental health at present.
I think ultimately only you can decide what is best for you. Given that it's your wife that has health anxiety, I can only empathise with what a difficult situation that must be for you. I suppose in a way it's thinking about what is the worst option.... telling family now and managing the consequences or not telling them and at some point them likely having to know but at the same time them realising that diagnosis was kept from them...
With your diagnosis being recent, are you due to have further testing to gather more info relating to your diagnosis? (For example, fibroscan, ultrasound, biopsy, endoscopy to screen for varices, extended panel of blood test to consider any possible autoimmune factors, etc). It wasn't until about 6 months after my cirrhosis diagnosis and multiple follow up/repeat investigations that the nature of my cirrhosis diagnosis became more clear. At the beginning, I thought I would be dead within a year whereas now I understand that my prognosis is far better. Having a better understanding of your diagnosis may make it a little easier to tell others.
This forum is full of helpful information and the British Liver Trust has a helpline run by nurses who are super helpful. This helped me early on with my diagnosis.
unfortunately I was diagnosed the week my brother unexpectedly died. So I told my husband and two children. I glossed over most of it with my kids… only to have them google it and then go into overdrive with anxiety. We had a sit down and frank discussion, now they know everything I do, including tests and results. Everyone else, my close friends and family know because if eating out with them I have to go through the menu choices with a fine tooth comb. I have AIH so are very careful what I eat. I think you’ve made the right choice in who you’ve told so far. My mother could never have coped. She died thinking I’d gone teetotal for my health… (true)! Good luck.
Personally I never told anyone except my husband, kids and mum. First and only symptom I had of liver disease was vomiting up nearly all the blood in my body, I lost so much blood I had a stroke, this is what everyone knew I'd had a stroke at 43 nobody questioned the cause. Even whilst on the transplant list I never told anyone again except husband, kids and mum, I never felt ill, looking at me nobody would guess I was ill.Yes you need to tell your wife, have all the information first so you can explain exactly what stage you are, what treatments you may need, what you are doing to stop it progressing. Be calm and to the point, ask her to come to your next hospital/doctors appointment so she can hear from an expert and ask any questions she wants. The British Liver Trust has a helpline you can call and they are there for family as well as patients, they can explain anything that you can't. There is no reason you can't be there till you are very old, there are things you can do to prevent the cirrhosis progressing, I came within weeks of death before I had my transplant 7 years ago, I intend to be here for many more. I had NASH cirrhosis, advanced nafld.
The British liver Trust website has a section on nafld it may be helpful to read through and show your wife.
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you would find it helpful to speak to others with shared experience, you can register to join a group here:
Thank you all for the responses, I think just knowing there are other people dealing with the same things as me makes it easier.
I know I will have to tell my wife at some point, though as has been suggested, I should really wait until I have a proper diagnosis/more information.
ATM I'm going off the results of a Fribroscan (CAP 350, 24 kph) and the bloods my gastroenterologist ordered (I'm being treated for Crohns), which came back with ferritin 641 and low caeruloplasmin.
I've been referred to a liver specialist, so hopefully I'll get some more definitive answers soon.
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