NOT AN ALCOHOLIC

[sandrakay]

OMG,I wish that people would educate themselves a little atleast,im so tired of explaining my illnes to them and still get that feeling that they dont believe me. i want to wear a sign that explains it and has my Drs signiture on it!! Anyone else go through this???

[Hidden]

I know how you feel, because I explained to my neighbour that I have PBC, and explained it is an auto-immune disorder, the ignorant fool went and told people I had aids!!

[sandrakay in reply to Hidden]

How the heck did they get that? It just gets so aggravating to have to explain it so that they dont form there own opinion and go around slandering your name!!!!

[Hidden in reply to sandrakay]

They read auto immune disorder as A I D, aids!! Ridiculous really. It does get tiring explaining all the time x

[Magnolia in reply to Hidden]

reni73, I think I would politely take over a written report of just what PBC is to this neighbor. Nothing makes me madder than a lie told about me. I found out my husband was telling his family, who live out of state, that I had a liver problem from taking too many medicines. I did a back track and told them the truth, even gave one of his brothers a print out!

[sandrakay in reply to Magnolia]

Magnolia,I bet that was the place to be when you found out!!!! I would be so angry!!!

[SC49 in reply to Hidden]

thats ridiculous to the point that I laughed out loud!

[Lisacj]

I am appalled at peoples lack of caring and assumption that we are alcoholics and we bought this all on our selves,, I hate having a drink even the odd one in front of family and friends who know, I seem to get very odd glares.I had to make sure when I told my husband that he told peopel it was my bile duct being destroyed and causing liver distruction and not to mention the word cirrohsis..Heaven help all of us

[mumofthree]

Its all down to peoples ignorance. I can probably count on two hands how many people actually know I have PBC...husband, 2 eldest children (23/25), sister and her husband, 3 close friends, my boss, dentist, optician etc. I got so fed up of having to justify myself....snide remarks from so called friends, questioning looks from boss..... that I now choose not to tell anyone I have PBC unless I absolutely have too i.e. dentists, opticians etc....and then I always make sure I take a copy of a PBC patient information booklet with me as the likelihood is that anyone new I see will not have heard of PBC....and that even goes for some Dr's....so what chance have we got !!!

Unfortunately each and everyone of us will come up against it at some time or another. Its all so tiresome!!!!

[sandrakay in reply to mumofthree]

I took a bunch of booklets from my Drs office yesterday,was a great Idea!!! TY

[Magnolia]

It's only been a year ago, I actually told my children, out of fear they could inherit this from me, after learning they could, although I've know for 10 yrs. Only my siblings, husband and neice knew. I knew all other people would think I had done this to my own self. I start now also, if I have to tell about it, that my bile ducts are being destroyed, also Lisacj.

Magnolia

[June9961]

Whenever I mention PBC to anyone I know what is coming next. They ask what it is. I was in a&e with a twisted knee and the consultant I saw asked my how much I drank then. I had to explain I didnt and that PBC is an autoimmune condition. She gave me the look. I suggested rather annoyed that she look it up while I was at xray. Her attitude changed when I returned and she took great delight in explaining it to the ortho surgeon. I find I am always justifying myself grrrr.

[Hidden]

Snap! I too get disrespect now I have PBC. Disrespect I have to say from the medical profession mostly. Especially if seeing a new medic. Got fed up of the practice nurses at the surgery I am with asking if I used to drink (of an occasion I might but I never got really carried away and it was of special occasions, festivities, etc and I'd never been a regular home drinker).

I took to not saying what PBC stood for and just said I have antibodies that are attacking my bile ducts which in turn is aggravating my liver, seems an easier reply as to say I've been going to the GP surgery for bloods now for 2yrs., the nurses I've seen don't seem to have even take an interest after I left surgery to actually just read a small bit on PBC as then they would know.

Deep down I have this feeling that one day I might just say I used to be an alcoholic as after all if I had of been I would have been offered more help from the medical profession than it seems I have since diagnose of PBC!

[witchiegirl]

Sadly, none of this surprises me. I was a nurse when first diagnosed and the ignorance amongst colleagues was woeful. My line manager told me a story - to make me feel better as I was abit freaked out - of another colleague with PBC who doesn't mind, drinks what she likes on nights out, goes yellow for a few days. All i could think was 'I've got tiny babies at home, i don't want to go yellow'. My youngest was 12 months then. I was terrified! and my line manager so unhelpful.

In some ways I can excuse ignorance from non HCPs, BUT a friend (not in health care)recently responded, when i told her happily that my recent biopsy had shown no cirrhosis, 'But I thought you could only get cirrhosis with alcohol abuse'. i'm afraid I got very annoyed :-). And my DH's cousin who has heard via family gripevine I have liver disease and assumed I am a boozer. Thing is i feel quite non-judgemental about boozers. it's an illness like any other IMO, BUT I hate being misunderstood AND unsupported. AND Nobody really gets this AI liver disease shit, IME.

Though staff at my local health centre are good on the whole. One nurse did ask why i needed my LFTs done AGAIN - I really wanted to scream 'Read my bl;;;;; notes'. I was VERY polite :-). if she asks me again, i won't be .....

[Hidden in reply to witchiegirl]

Not to sound disrespectful but I have will stick by my notion that alcoholism isn't an illness as such. It becomes an illness when one drinks far too much too frequently and then their system becomes reliant on it. The illness is then the damage that is being done.

I think I get annoyed with regards to heavy drinkers as my late father did drink regularly (though never a home drinker and also he didn't get up at morning and need a drink before starting the day). It was his smoking and also frequent drinking after redundancy at aged 53 that finished him off at aged 56. (Not liver though, burst stomach ulcer but his other organs couldn't cope after surgery.)

With alcohol to me the difference is if a person ceases drinking the damage that they may have already or have done to their liver will possibly not progress further but their health could be compromised. With PBC regardless of what we seems to do to stop progression it can just keep on trucking along. That's how I see it. A couple months back in 2010 prior to my diagnose of PBC., I saw a prog on tv and 2 men were having scans of the liver at the time. A youngish man in his late 20's who was obese and it was found his liver had become fatty. The other man in his early 50's was found to have developed cirrhosis through heavy frequent drinking. I noted that he was informed that if he didn't quit the booze he would be dead in the near future but if he did, he could probably live for longer. Unfortunately it seems that the lot of us with PBC have no choice to make as we never know how the progression is going to be.

[TracyLou]

I've had a terrible experience, a so called friend did not believe me. Her husband even a policeman told people in our small community I was an alcoholic. They were the ones that were drinking excessively. I have a handful of friends that I can call real friends that know about my illness although I'm not 100% they understand completely but neither does my family as I don't look ill.

I also to chose not to go out socially with friends either in the evening. I have 3 children where one is special needs and a loving partner. People think I'm weird because I like to stay at home. Why are people so judgemental. I don't judge them and I get on with my life.

[sandrakay]

What made me so angry was my Best friend had to take up for me and had to almost argue with the guy!! He also said well she shouldnt have drank so much,Ive never drank anything but beer,and that was at social get togethers like bowling,or cookout and such! I would love to run in to him cause i will be speaking for all of us when i give him an adjustment in his ways!!!

[witchiegirl]

Peridot, you aren't being disrespectful - you are saying what maybe half the population is saying :-)). I still think, in terms of it being an addiction, it's an illness, a mental health problem if you like. Yes, people get themselves into situations that others on the sidelines might think can be avoided.

But judging others doesn't help us with all the ignorance around our disease/s. Yet I know I do do it too. I find myself getting most annoyed with middle-aged woman who i see drunk on trains :-). Certainly since my latest flare up I've found myself thinking 'She's got better LFTs than me, probably, and I've never drunk excessively' <chunter, chunter>. I see the anger and feeling cheated (I'm talking only for myself here) as part of adjusting to having a shitty disease only because of wonky genes and some bad luck, not because I've done anything wrong in the past. It would be easier if others 'got' it but it won't really change how my disease progresses for me. And in the meantime I have to live the life I've got.

[jennyspringer]

These experiences are all so familiar. I am 64 and have never drunk alcohol ( peersonal choice) I was diagnosed with PBC 5 years ago but the thing I found most distressing was even after the diagnosis each time I visited my GP his closing statement would be " watch how much you are drinking" this is after repeatedly telling him I did not drink. I even took my husband in with me on one occasuon to tell the GP I did not consume alcohol,

even now I am convinced that he does not believe me ,

[sandrakay in reply to jennyspringer]

I would have went to different one,if available!!!

[mrspiggy in reply to jennyspringer]

This so reminds me of a visit to my dr when pregnant with 3rd baby about my fears and worries about breastfeeding (long story but major issues feeding 1st 2 and post natal depression) so it was a very touchy and emotioinal subject. I poured my heart out to him and he seemed concerned until when I said I had decided not to BF 3rd baby he went into this speach about giving it a go and how good for the baby it was etc... I left that surgery so angry and upset. He just didn't listen to a word I had said. It turned out I did give it a go but that's another story! The same surgey called me up to say they had my blood results and wanted to talk to me about them. I was obviously worried and had to wait 24 hours for the appointment. When I arrived the dr asked me if I had any idea why my LFTs were so high!! I was gobsmacked! This was my surgery and I had been diagnosed with PBC about 9 months before but he hadn't looked at my notes!!!!! He was very embarrased!! I have to say I don't have a huge amount of confidence in them anymore!

[jennyspringer in reply to mrspiggy]

Hi Mrs Piggy I feel for you until diagnosed with PBC I could not fault my surgery, I even spoke to my consultant yesterday to say i was contemplating changing doctors and he said not to do that as the practise I was with was one of the best he knew, and to just change the doctor within the practise. since his comments I must admit that I feel happier about the practice and will just change to a younger doctor who may be interested in learning about the disease. I do live rurally and my doctor told me that i was the only patient in the practise that has PBC so he didnt know anyting about sadly after 9 years he still doesnt seem to have taken the time to learn anyting. Very typical of some Doctors so much to know and so little time to learn!!

[SC49]

I have to respectfully disagree with the idea that people who are addicted to alcohol some how make the choice to be addicted. I work in services for people who are alcohol dependent - some of whom no longer drink and others who are chronic alcoholics who have lost literally everything of value in their lives.

Since I started working there, I have learned that noone chooses alcoholism - the saddest thing is that by the time someone realises that they are addicted, then the damage is done and it is a long hard job to stop drinking. Some of the people that I have worked with are very young people who don't even realise that they are alcoholics.

The medical profession can't agree on why some people who drink become dependent and others don't. There might even be many different kinds of alcoholic - some who are 'predisposed', some who have chronic and unresolved mental health problems, some who just became dependent because they drank habitually over a long period. Some people have had traumatic experiences that they have tried to deal with by drinking and blocking it out - fairly common I believe in ex service personnel. Some people 'learned' about drinking when they were little kids at home. Some people who are alcoholics actually drink a lot less than people who drink 'socially'.

I understand that if they stop drinking they can very often reverse or limit the damage and that it's frustrating to know that they won't (or can't) do it. It's very frustrating to work with someone, to see them get sober and then a few weeks later see them swinging in singing at the top of their voices. But I know that whatever it was that tipped them over the edge must have been something that was causing them a lot of hurt

You know how it feels when someone accuses us of abusing alcohol? Well they get it all the time - every single time they go to see a doctor.. no matter what it is they go there for. I once referred a woman to the doc to check on a rash that we thought might have been something infectious. The doc said to her 'you are an alcoholic', gave her the address of the nearest support group and sent her on her way. He didnt even look at the rash!

It is a wretched existence and one that I personally would never wish on anyone.

I think i would rather have PBC than alcoholism.

on't get me wrong - it frustrates me a lot when people assume that I am a drinker and i have cut loose on more than one doctor for asking about my alcohol intake (it is in my notes - I don't drink)