I'm sorry if this is insignificant but I have just had a 'health review ' at my local doctors and made to feel ashamed and embarrassed and absolutely awful about myself.I have liver cirrhosis, I was ill November 2022 and had numerous scans and it was confirmed by a fibro scan. It scared the hell out of me!
I'm monitored every 6 months. I'm doing really well! My spleen reduced significantly in size between 2 scans, 2 months apart. My bloods are stable.
I'm the healthiest I've ever been! My diet is on track, I'm slimmer and had a great positive mindset.
Until now.
I was asked about units of alcohol I consume, I said none. I haven't touched a drop since 28th November 2022. I just flicked a switch and stopped. I found I was explaining myself to her, I asked what the screen said. I feel ashamed and judged. The way she looked at me. It was written all over her face.
This is what I fear.
She doesn't know me yet she's judged me.
Anyone else experienced this?
I'm really upset.
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HotLemon
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I was asked how much alcohol I drank when I was diagnosed. They didn't believe me either...I rarely drank, maybe 2 to 4 drinks a year.
They also got on about my weight, which is a major problem for me. I lost 2 1/2 stone in one year of a strict diet, mainly salads.
After last Xmas, I started to eat normally just in smaller portions and I am gaining the weight back. I am back up a stone. It's like I look at food and gain weight. What is worse my Mum who eats double of me is losing weight....
You do the best you can, that's all any of us can do.
If you can't stand your doctor or feel they are judging you, Can you ask for a different one? Maybe a different hospital?
It sounds as if you have had major improvements... you are doing your best, So keep up the good work! Stay positive! mental health is so important..
Give yourself a High Five for doing so well!👍😘😍😁🤩
Good luck!
Onlyabrit
I've got a health check tomorrow at my new local GP, so will probably he asked similar questions. I will answer truthfully. If I get any kind of distain from the nurse, I shall politely tell her that that was me then and this is me now. I am NOT ashamed of my partying past. I've led an exciting, fulfilled life, which included alcohol. So what? It was great and I don't regret a thing. Just unfortunate that I have damaged my liver by doing so. I am like you. No drink for 9 months, bloods back to normal, blood pressure down to normal, lost 2.5 stone, look and feel great. Don't let anyone make you feel bad about what you did in the past. It's what you do now going forward that counts. Remember that. You're doing good. X
Sorry you’ve been made to feel this way, sadly our GPS and doctors only see what’s in front of them, mostly your medical records and assume because your ill health is down to drinking, you must still be a drinker, that and we don’t have a personal relationship with our doctors these days nor are they seemingly able to form one due to the time constraints they are under and the pressure they are under too to get you in and out quickly.
Rightly or wrongly this is sadly just the way it now is, but it wouldn’t hurt them or anyone in the health profession to show some empathy, kindness and even just to try and get to know their patients a tad so instead of asking how much you drink, ask if you’re still drinking and if not, keep it up and well done you etc.
I also found when I stopped drinking at first, my doctors kind of looked at me and saw just another alcoholic who might have suddenly stopped and claims to have never touched a drop in x days/weeks/months etc. nor ever will, so they were not as engaging as they are now knowing I mean business and have kind of proved it.
I mean how many times have they seen it all, for someone to lie or to start drinking again despite claims otherwise. In many ways you can’t blame them for being cynical , but you can question them for a lack of empathy or downright rudeness and most certainly for displaying un professionalism, I’ve had to stop-check my own doctor once or twice for such.
You should be proud of what you’ve achieved and for taking your health seriously and to be making positive changes and to never have to feel ashamed. Sadly and again alcoholism comes with a lot of stigma and even liver disease does, some automatically assume if you have liver disease or cirrhosis you must be an alcoholic and if you were previously an alcoholic you will always be one.
That’s why I refuse to label myself as an alcoholic or in recovery or whatever other monicker normally follows someone who was a heavy drinker once. Yes I was a heavy drinker, yes I was once what they call an alcoholic, but I don’t drink anymore, so therefore I’m nothing. I’m just someone who now doesn’t drink.
Anyway good luck, stay strong and positive and keep making yourself proud of yourself and don’t let anyone shame you or make you feel ashamed, you’re doing amazing, take care.
Thank you so so much for replying and taking the time. I nearly deleted the post when I re-read it half hour on but I'm glad I didn't as it was as open as I felt when I wrote it.Maybe my reaction (as emotional as it was) was due to me still dealing with my situation a year and 7 months on. I'm struggling mentally.
Give me anyone else's problems and I'll hold you up, be there and be strong and supportive, my own...... I just can't deal.
Although my medical/personal life is very much a secret and I don't talk, I am proud I just turned things around and changed.
I'm proud I had the courage to reach out on here.
This in itself is a massive step for me.
I greatly appreciate the honesty, directness, understanding and clarity you all bring and gave me.
There is still a stigma attached to alcoholism, which should not be the case. Alcohol dependency is an illness, not some kind of deviant behaviour. In addition to physical treatment for cirrhosis, sufferers should routinely be offered counselling, and certainly they should never be made to feel guilty about their condition. A chance meeting with a young nurse in Casualty (where I was admitted in a state of alcoholic unconsciousness) gave me a leaflet about a local self-help group which changed my life. Carry on doing what you're doing and ignore the cynics.
I have been made to feel like i am lying when i say i never drink alcohol ( ive never liked the taste).. one doctor actually said " well how the hell did you get liver cirrhosis then ?"My reply was" you tell me " I hate that this disease makes me feel that it's my fault..i wish i had the answers but I'm still waiting to see gastrologist since jan 2024.. been told there's ayear long waiting list ..i obviously don't deserve quality and timely care!!!
I think doctors/consultants should put does not drink alcohol then this saves the embarrassment of being asked if you drink. On the other side, if you take up drinking alcohol again then patients should inform the liver team and GP.
I have this entered on my records that I do not drink (stopped in 2019) and I am not asked the question.
I have done all that is asked of me and go for a second biopsy on Monday.
Good luck and prevent drinking if you have down days. You are doing so well so please keep this up.
I have AIH diagnosed in 2018 after being called back to the surgery after a routine blood test for my thyroid showed my liver results were sky high. When I went back to see the GP after the repeat blood tests as I walked in I has asked “ are you a drinker?” When I said no he replied “well, you have something wrong with your liver, I’ve referred you to a hepatologist”. The consultant told me at a later appointment I had shown abnormal liver results since 2016 but it had been missed by the GPs. Luckily I’ve changed doctors and my new ones couldn’t be more helpful. Only once more have I felt judged, by a scan technician, who obviously saw a diagnosis of cirrhosis and felt I wasn’t worth being nice, friendly, pleasant to. I haven’t met her since, long may that continue. I feel, to be so judgemental, they must be unhappy in their own lives and pity them. I’m well’ish, happy, surrounded by friends and a few family members. Funnily enough both one brother and my sister, now both dead, were alcoholic, so I know what “ judgemental” feels like.
hi. For 10 years my GP kept telling me that my lifestyle (drinking), was causing my abnormal LFTs. After 3 liver scans & being diagnosed with severe fatty liver I was referred to a specialist. I was then found to have Hepatitis C (from a blood transfusion). I have now been treated for the virus but sadly I have developed cirrhosis. If the GPs had not been so sure I had caused it myself I could have been cured before it developed into serious liver damage.
Sorry to hear this. Encouragement is what you need as you are doing such a good job. Sadly the word cirrhosis to some people means alcohol when the biggest cause is most likely being over weight or a virus. My hubbie had to have a CDT blood test for the DVLA as this shows alcohol in the blood if consumed in the last 6 months or more. Maybe Dr's should add this to their tests if they doubt you. Carry on the way you are as you are doing so well and give yourself a hug from me. Xxx
You shouldn’t be made to feel bad and the question isn’t an insignificant one either. BLT did a big exercise a little while ago about stigma and liver disease and I remember there being a lot of feedback about health professionals attitudes. So you are sadly not alone in feeling this way. I have cirrhosis caused by alcohol. I was diagnosed over 3 years ago and haven’t had a drop since. Every time I have a check up they ask about alcohol and I always say the same thing…not touched a drop in over 3 years and don’t miss it. All the blood tests attest to this…so it really isn’t an issue. I remember at the start of my care though there being a good few lectures on alcohol and cirrhosis and at one point I remember getting quite cross with my consultant because he put that I was ‘currently abstinent’ in his letter to my GP after my appointment. At my next appointment with him I discussed this. I told him I wasn’t ‘ currently’, but ‘completely’ abstinent! He apologised but went on to say that alcohol addiction is one of the most dangerous and most difficult to deal with. Alcohol is widely available, subject to a lot of social pressure, more physically addictive than many class A drugs and as a result the relapse rate is high. He showed me some statistics and then explained that he wasn’t judging. He fully appreciated the difficulties. He also said that given alcohol was the cause of my disease he’d always enquire about alcohol use so that he was able to accurately judge my liver’s condition, but accepted that I’d obviously changed my relationship with alcohol and went on to congratulate me. It wasn’t doubting my resolution it was more an recognition of how hard it is to do. The discussion really helped. It’s always better to clarify and feedback to health care professionals how they are making you feel. It sometimes falls on deaf ears…but in my experience not often.
My hubby is life long t-total after getting pie eyed on his 18 birthday, he was sick and vowed never to touch it again and never has.
When he was first admitted to hospital with a variceal bleed and was in HDU a passing doctor said "Let this be a lesson to you, you need to change your lifestyle!", another time on going to our own GP for a post banding infection the doctor said "& are you managing to stay off the drink?".
Even a couple of weeks ago when called in for his potential transplant a doctor came in and asked about his smoking and drinking history and was amazed when we said no - he asked "What never even a small one at Christmas?" - nope none, zero for the last 45 years all thanks to 2 pints of Newcastle X and a pint of Old Peculiar.
Hi, it totally understandable that you feel this way and I think it’s wrong the way you were asked. You said you no longer drink and that should be it.
I have cirrhosis and on original diagnosis I said I have never drunk alcohol which was accepted. Diagnosis of cryptogenic cirrhosis, possible NAFLD. But at my follow up consultations the dr always mentions not to drink and this is duplicated in the letters. I think 🤔 if I have never drunk alcohol why on earth would I start after being diagnosed. I suppose it’s something they just have to say/ask.
I think sometimes these professionals need to think before they ask questions which they might deem as routine.
Hi I love that you found the switch me too. Trying to explain that to people gets a strange result. I haven’t had a drink for 15 month and never intend to. We should be very proud not at all ashamed. I am hopefully on my way to compensated, just low platelets to sort themselves out. HEROS.
Regardless of what health department I had to visit they would always ask how much I drank, when I said I didn't drink they always asked when did I stop and when I said I've never drank they would give me the look, i had an appointment with an orthopaedic surgeon and she said to me "sorry I can't access your file for your history" but the 1st question she asked was how much I drink, when I looked at her with my look she said "oh sorry all I can see is you have cirrhosis, so I said I don't drink and she replied " when did you stop" so I just replied cirrhosis isn't only caused through drinking and for future reference it might be an idea to contact the patients own GP before asking insulting questions.We shouldn't have to explain why we have cirrhosis, I know it is most commonly caused though alcohol but it takes 2 mins to read through a history or to contact a GP, seems its easier to embass or insult us xx.
i find that the best way to treat rudeness is to directly challenge them .i said to one particularly nasty doctor.IM not a liar ..test me if you like but dont address me so rudely in future
hello - i appreciate this is a bit late, but please can i add something? That feeling of being judged and all the assumptions - they are sadly inevitable (What do doctors do at medical school?!!!).
And i must add that hepatologists are seemingly the worst - i have worked with medics for nearly 40 years in my sober, sensible job. Cardiologists are ‘challenging’ but all they have to say is ‘loose weight and exercise’ (oh the irony!!) - hepatologists need to have some compassion - not all liver damage is self-inflicted and i have to question to notion of self choice in addiction etc.
i am unclear if poking a doctor in the eye is illegal, but maybe try that? And please capture a video of it….
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