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PBC Foundation
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How can familly be so cruel

Has any else experianced rejection from familly members and lack of under standing

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Hi lainey67 ,

Yes I have , I go to all my appointments on my own, and my husband or boys , who are in there 20s never ask how I got on . They seem to think that because I work and do housework ironing cooking and everything else , I am ok , sometimes I feel like screaming but I just get on with it all . Just because I look ok everyone seems to think I am xxx grrrrrrrrr xx

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Gosh, reading your blog i though it was me!I have NO help from my husband at all, i could count on one hand how often he has cleaned the bathroom, hoovered,cooked etc. He too never comes to any appointments and has no clue at all.If I was ever unconscoius he wouldnt be able to tell the Dr's anything,he could not name 2 things that are wrong with me,I feel like I should wear a sign that says "I'm a mug",,friends have mostly lost contact, I used to play tennis every Saturday,I dont see or hear from any of them, it is very much out of sight out of mind.I have made contact many times, i just cant be bothered now to be ignored,I think it took so long to diagnose my problems that all are just bored. I sadly have come to the conclusion, peopel really dont care.Very sad when its your own family though.Not a cheery read, we are on our own i feel, except for this site, xx

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Im so sorry for you both,support is so needed in this illness!!! I wish I were there i would go with you to the Dr. and have coffee and hash it out!!!

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Lainey67, I've been through some of this behavior from my husband, but I have a daughter and a neice who will help and talk with me. It's not the PBC that leaves me needing help, it's vertigo and a back problem. After I had vertigo, I had a panic attack, not even knowing what it was. Then came another as I was preparing to get things ready for our Christmas get together.

I told my husband, I need to go to the ER....never ask for this in our 25 yrs of marriage. It made him mad, and he began shouting at me, he would take me there and just leave me, he wasn't staying. I called my neice, and they both took me. My carbon dixiode was too low, which was causing the the adrenaline rushes and hyperventilation. So how much do you think this helped me with him yelling at me? I missed the Christmas gathering with my siblings. Two days prior I was fine.

Magnolia

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Magnolia your husband doesn't deserve you! How on earth do you tolerate him! I felt very saddened to read how unsupportive your husband is, and other posts too! I hope you always have the strength to continue like this... xxx

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Just read this Skywalker, thankyou for that. He provides for me well, and is a hard worker, in a lot of pain himself, but he lacks understanding and sympathy. He was an abused child growing up, and caused his personality to be this way, and this is how I forgive and excuse his behavior. I'm fortuate I have family that will support me and help also.

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Lack of understanding and rejection unfortunately is something that is experienced by many of us whether it be by a member of your family, a close friend, work colleague etc etc, Whoever it is, it is very hurtful, you feel alone, almost abandoned.

My PBC diagnosis came about as a result of blood tests carried out by a rheumatologist investiagting if I had rheumatoid arthritis. My symptoms were severe joint and muscle pain and as rheumatoid arthritis ran in our family they thought it was possible that this was the problem with me. I had suffered with severe joint pains for almost 10 years, the pains started 10 weeks after giving birth to my youngest son. I had been referred to a rheumo previously but was told I didn't have arthritis but was not given any answers to why I was in pain. Any way I self medicated for over 9 years, learned to cope...ignore the pain and just got on with things until I could not cope any more and was referred to a rheumatologist for a second time.

I was referred to gastro by the rheumatologist without me even being told as my rheumo appointments kept on being cancelled. The first I knew I had been referred to gastro was when I received a letter from them confirming my referral. I rang up thinking there was a mistake and gastro told me rheumo had referred me because they wanted me to be checked out by them because of a result of one of the blood tests I had had done. I still thought there had been a mistake when I turned up for my gastro appointment. I was told I had PBC a disease which I had never even heard of before. When I asked the registrar to explain what it was... Was there a cure... What could I expect.... he was completely incensitive... he gave me a Dr's advise sheet on PBC because that was all he had. He told me there was no cure and I could have 3 years to live.... I know that is not the case now as my 2nd appointment this time with consultant for confirmation of diagnosis (after biopsy. scans, MRI, blood tests etc) put my mind at rest. But following the 1st appointment with the registrar.....I felt as if I had been punched in the stomach..... I was absolutely devastated... all I could think of was that I would not see my youngest child grow up, he was nearly 10 at the time.

When first diagnosed it is difficult enough for us to come to terms with being told we have something wrong with us let alone (at this moment in time) an incurable liver disease. But when you then come up against these people who for whatever reason either.... Cannot find it in their heart to offer you any support however small.....Don't even ask how you are, it's as if they think that if they do ask you will somehow become a burdon on them so instead they say nothing or even just ignore you.... They think just because it is not outwardly visible that you are possibly making it up......They make uneducated judgements about you on hearing the word 'cirrhosis' like you must have a drink problem.

These days I choose not to tell people that I have PBC unless it is absolutely necessary as I found that I was having to justify myself. I have never been one to moan about being in pain etc because when you have young children you havent got the time and just get on with things. Obviously my close family knew...my parents and sister and my husband who used to help me get up and down the stairs and pick the baby up to put in my arms because my hands, arms, feet, knees and hips were worst affected after I had my last child.

When I was first diagnosed in Jan 11 I told my husband, sister, her partner and my 3 close work colleagues. I chose not to tell my parents as they are both elderly and believe I just have arthritis. I also did not tell my children as I was finding it really difficult coming to terms with it myself and just could not tell them at that time. I told my 2 eldest boys about 6 months later, they were 21 and 19, my youngest knows that I have to take tablets but just thinks that I have problems with my stomach and has not pressed for any more info.

My 3 close work colleagues knew I was having some investiagtaions done but no one else was aware as I tend to keep myself to myself. Since telling them I have PBC ...one colleague never asks....My closest work friend who I always used to confide in will sometimes ask but always changes the subject or turns the conversation around to her ailments....its as if she only asks because she thinks that is what is expected of her but is not really interested....My other colleague who really has surprised me with how caring she is.. always asks how I am, I never say I am in discomfort but it must be obvious because some days she can tell and says "not having a good day?'' I had to tell my boss because I had a back to work interview after I had a 4 day stay in hospital. I told her I had PBC and of course when I said 'cirrhosis' I could see that look on her face and found myself having to justify myself by saying its an autoimmune condition and no I don't have a drink problem its not caused by alcohol. She said 'I was thinking then you must have been a quiet tippler as you never seem to drink on our work parties'.

As for my husband he never mentions it and never asks how I am.....he never accompanies me to appointments..... when I am in a lot of pain or struggling with fatigue he says I am making excuses and should pull myself together.... I do not know if he just does not believe me, does not care or I may be doing him an injustice and maybe its that he cannot accept that I have an illness....all I know is that it makes me feel very unhappy, unloved and unwanted and when I say this to him he just gets angry. My sister on the other hand has been my absolute rock, she accompanies me to all my appointments and I know that she is always there for me if I need to talk or when I am having a bad day. I will not always admit to her that I am unwell as I do not want to be a burdon on her or worry her but it is nice to know that there is someone who is willing to listen and offer support.

This site has been an absolute god send for me as it too offers a ear when you need one and everyone is so helpful and supportive. So please do not be afraid to seek support from any one on here, you will not be rejected, we are all in the same boat and no-one understands more what we are going through than a fellow PBC sufferer. Be assured what support you are lacking from family and friends on the outside can be found in abundance on here.

I am sorry that this has turned into an essay.

Best wishes and hugs sent your way

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I had a vertigo attack on the Feb. 28th, and my husband started getting angry again. He said You're wanting to go to the dr. again, don't you. I did, but didn't and would not admit it. My reason was I knew at the time, it would be a perfect time for the dr. to see my symptoms. They can even tell by following your eyes. I ask my husband point blank "What about this makes you so mad?" Is it money? Is it because I won't be able to take care of you? Or are you mad about having to carry me to Drs?" In his credit he does a lot, has always been a hard worker, and in a lot of pain, himself.

My first test had came back negative for anything. I was fortuate, new test were scheduled a few days later. My daughter took me, you do not drive with vertigo! Finally they found the problem, right inner ear at a 27% loss of function. I have Meneire's disease. My bad symptoms of the PBC haven't started yet. When they do, I don't know what will happen.

Magnolia

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Thank you so much every one,you are so right mumofthree this site is a god send,best thing i have ever done was to find this site.I am so sorry that you have all been through some of the pain that i feel right now.I think yesterday i had just had enough.I have 3 children and 3 grand children my son who is 11 has autism and my daughter who is 22 has bad kidneys,renal colic and duplex kidney.My daughter is always in and out of hospital with even infections or passing stones.She was taken into hospital 2 days ago passing stones.My mum is also in hospital and is disabled,so i have been visiting both plus looking after my 3 year old grandson.I really feel it for my daughter when she is and have helped to look after hermy mum,my grandson as best i can.She can be very selfish at times,all my familly can and it has all become too much for me.It has now become a competion to who has the worse illness,she will say stop moaning when your as ill as me all the time then you can complain.When she is well she bounces all over the place and has more energy than i will ever have.i like all us pbc friends have fitigue and severe joint and muscle pain.I was tired yesterday as my grandson had me up most of the night,he was missing his mum plus he has chickenpox,i felt so tired and just asked my daughters partner for some help as it is his son,you would think i had asked for the crown jewels,they both turned on me and said that i dont care and that i am selfish and that my daughter needs to rest not me.Her partner has turned out as selfish as her.My husband stepped in and went to visit both my mum and daughter so i could have a rest .I have my grandson back today for 2 days so she can rest as she came out of hospital last night.I am sorry this has turned in to an essay,i am just so upset about how selfish family can be,i love to help and care for the family but surely you should all work together and compromise.There attitude is because i have never been in hospital with my pbc i am not as ill as my daughter,i have told them all lots of times that the 2 illnesses are very different,it is like i am constantly having to try and proove that i have some thing wrong with me.My partner also has me running about ,so i was shocked when he helped last night .My mum and son are a blessing even thoe they both need lots of help they are always very thought full towards me ,and if it wasen't for them i would just leave.I dont want sympathy as i have always looked after my self but i would like some under standing.Thank you for listening i really appreciate it.Take care every one xxx

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No wonder you were on a downer who wouldn't be with everything you have on your plate.Sometimes the more you do for someone the more they expect you to do. Like me you have probably put your own life on hold to care for your family members....as far as your daughter and her partner are concerned maybe you should stand back a bit and not be so ready to step in and help all the time, you have to be cruel to be kind sometimes. They are taking advantage of you...let them call you selfish but if the truth be told they are the selfish ones by not taking your health into consideration. As you said your daughters partner is your grandchilds father so he should be looking after his own son not expecting you to have him all day and night. If he is working then thats different you could offer to watch him while he's at work or if his parents are about they could offer. But after work he should be taking his son home because after all you've got your 11 year old to care for too. Please don't think for one minute that I am being unkind or that I am suggesting your daughter is not ill but she needs to grow up a bit and learn that when you have children you can't just expect to offload them when times are tough. they need to stand on their own two feet. You have probably had times when your children were younger that you felt really unwell yourself but you just had to get on with things. Now is the time when you need to look after yourself.

Hope you are feeling a bit better today and that your daughter makes a quick recovery.

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Hi all, I think what we all need to remember is to have some me time, I feel very lucky after reading these blogs that I have a very helpful loving and understanding partner, he can never do enough for me and wants to know how I am feeling all the time, he has his own ailments but even in the middle of the night when I am being driven out of my mind with the itch he is always there for me and is my rock and my reason for going on when believe me in the past I have been so low I have thought of ending it all. (not any more though after meeting my wonderful man)

Because there is nothing to see people do not understand PBC, I told my Dad when I was first diagnosed back in 2006 and I think he has asked me twice how I am getting on and chooses not to mention it so I don't tell him how I am and that seems to suit both of us.

I feel for you all, we all have our own burdens and things to cope with and coming on to this site is a massive help knowing you are all there and understand what I go through and the uncertainty of the future is a big comfort to me and my partner.

My love goes out to each and every one of you.

Debs x

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Thank you every one i hope i haven't deppresed any one too much,i am sorry to hear that some of are going through the same,my mum always used to say the better you are to people the worse they treat you.I think even at 46 i still have so much to learn about people,i just wish i could learn to toughen up.I surpose like all of us i still cant get my head around pbc yet and how you can feel so ill yet be in early stages.You are so right mumofthree i need to take a step back and let them all grow up.xxx

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Please, don't worry, don't expect too much of others, don't froget about gratitude, when anything good happens. Nobody will feel the same, we have to learn how to express our tiredness, lack of strenght very straightly/concretly. Manifest directly. If tired, go to bed, and learn to say no. They don't know, it's not on our faces, like in many other ilnesses. Everybody says, that people in pbc look so nice, that's a gift or not, we can see. Be patient to Your falmily, we expect the same. I'm very happy to have You here, as there are not much people who are empathic at all, and there are so many sufferers, about whom we don't know. For men it's not easy, even if they are ill, to take care of an ill person just the psychic side. (It's not easy, as they are also worried just don't understand anything. ) Appriciate all their good steps. And every good day and hour, life is much nicer then. I learn this now, and everything looks much nicer. And I feel better too. By the way a little step back from everything and everybody, little less love and more understanding towards my beloved helped me to feel more inner peace. And help comes from different corners, from this blog also, constantly. Happy eastern, snow is finally over, today it was raining, but tomorrow I know, the SUN will shine :D

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Thank you gizocsi i normally try to stay as positive as posible and take each day as it comes.I have always been a get up and get on with it sort of person and am usually the last to complain about anything.I have always cared for alot of people and i think that has been the problem as now i am not as able,i hate feeling like this as i noticed tonight whilst visiting my mum in hospital,there are alot of people worse of than me.me and mum even had a laugh with one of the nurses i wouldnt mind but up to yesterday i had not suffered from the itch,i just couldn't stop scratching tonight,my mum only shouts out stop scraching like that everyone will think you have flees,i tryed to explain that i couldn't help it but by this time every one on the ward was staring,i just laughed it off and told everyone that i had very itchy psorisis,which i do suffer with.Thank you again to everyone,and happy easter to all xxxxxxx

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PS i forgot to ask as i have only just started to itch after 7 months of being diagnosed could this mean the pbc may of progressed.xx

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I have noticed when reading the letters that a high majority of us are carers or have been carers. People are so used to us caring for others that it doesn't enter their heads that at times we could do with some care ourselves. It was wonderful tonight when an old lady who I visit and phone regularly actually rang me and asked me how I was. On Thursday I went into a card/gift shop and there was a dreadful chemical smell coming of some boxes of Easter novelty things rather like the smell that comes of new paper and I took a dreadful asthma attack. I started to cough, my eyes and nose were running and I could hardly breathe. I completely lost my voice for a short time and when it came bag it was all squeaky like when kids inhale helium. Very frightening. I met this lady and her daughter just after it happened and they were amazed at how I had reacted. I think the daughter now believes how real these illnesses are and all their queer symptoms and has shown me more understanding.

Panic attacks are hell. Breathing into a paper back helps, or cup your hands together and cover your nose and mouth breathing in the same air. I find homeopathic arsenicum album helps me. But check before taking it if on other medication. My Dr. gave it to me. Breathe slowly, (easier said than done when you are in the middle of an attack. ) but that is what they tell me to do.

My big problem at the moment is down the right side of my face. I feel as if I have been punched by a heavy weight boxer. and my lips and face feel numb, with a pulsating feeling in my head ,not pain, but really really throbbing and uncomfortable. Anyone else experience this. along with tinnitus.

I am blessed with a good husband who helps with the housework and runs me around when I am too tired to drive but he does not like me talking to anyone about my symptoms. Tuts and shakes his head which is very annoying. That is one reason I like to off load on this blog. He does not know that I am doing it.!

I hope that you all have a lovely Easter and as free from symptoms as possible

God Bless you all

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Ellanvannin, it was more than a year ago, I went into to see my PC dr. because my ears kept bothering me, I was placing rice bags on the side of my face which helped. My dr found nothing wrong. Then by last yr in Oct. I had vertigo. I had had vertigo about 10 yrs ago, and at that time had pain on the side of my face, next to the ear, and pain behind my eye. Just a nagging pain.

After a MRI and seeing a Neurologist, he said it was a neuragia, and some clicking of the TMJ. I have Tinnitus all the time now, and with a little anxiety, I hear the blood rushing in the arteries of my neck. My pulse rate this morning was 120, and when it's that high I hear it in my ears. I think the connection to all of this is the auto-immune system, just the same cause of the PBC. Now I'm diagnosed with Menerie's disease.

Magnolia

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You are so right about the panic attacks, I didn't even know what it was. I just thought, something has really wrong in my body. You feel like your dying!

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I have seperated from my husband over this, he said I was being lazy and idle and 'acting up'. My mum and sister have been brilliant, especially my mum, she comes with me to all my appointments and has ear everything she can get her hands on about PBC, and knows what questions to ask my consultant, I don't know what I would have done without my mum. Lynne

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Lynne-k-y, I'm sorry about this, but am glad at the same time, you were in a position to do this. God bless you Mom!

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I usually go with my wife, but the couldn't make it at the last one as I had to be in Aberdeen. I feel obliged, not only because I'm the RV for Angus, but also because she's my wife! I try to do my share in the house, as well as working 2/3 days a week. I do the hoovering - only have 1 carpet and 3 rugs. Wooden floors are better for her asthma than loads of carpets. Usually do the bathrooms deep clean once a week and the windows in & out once a month. Yes, I think the problems emanate from outwardly there being nothing much to show for PBC, but I know that AM gets so fatigued at times that its ready for bed before 8 some nights. Mind you I think she just prefers the 'baby dolls' and dressing gown!

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I must be one of the lucky few because my husband is very understanding and helpful. I was probably lucky in a way because my sister suffered very badly from pbc and ended up having a liver transplant. He knows that although he cant always see the symptoms that I suffer from that I will get very fatigued quickly and that my body pains are very debilitating at times. My children are also beginning to notice how bad things have become and although they dont live at home they give me a lot of emotional help. Most of extended famiky are great too. As for people I meet and tell I have pbc give me the I cant see anything wrong with you look. We have a house in the country in Aberdeenshire which has a large piece of land. It breaks my heart that I cannot maintain it and gardens and therefore we are having to sell it. We built this up from practically nothing, a house in the middle of a park. So sad.

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I read all these comments about rejection with surprise, because I thought this had only happened to me. I hace C.R.E.S.T syndrome. (systemic sclerosis) and pbc. My husband came to ucl hospital for this diagnosis, and said "Oh it is very serious isn't it". Within a few weeks he left me for another woman. We had been married for 20 years. When I queried why, he said it was because I am too ill to look after him. He was 6' 3" and built like an ox. Had no disabilities whatsoever. My only regret is that I was blind as to how utterly selfish he was deep down. I am no pathetic whimp and never exploit others because of my problems. I had been a good hard working wife and Mother. I have experienced friends diminishing too. I guess we aren't much fun any longer and they find the deterioration depressing perhaps. I think the only person we can rely upon is ourself. I do dwell on the injustice and profound disappointment of discovering how uncaring people are, and try to tell myself that evolution just passed them by. One day they may find the boot on the other foot. I wonder how I will respond to them if and when it does. I bet the telephone will not stop ringing then!

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Hi All,

I've had both sides of this, my family have all disowned me, mother,sister and two daughters, they all said I was just being "a bit dramatic" and was only wanting attention as my sister had been diagnosed with cancer three year ago, but I've had PBC for eight years now. but my partner and step daughters are there for me twenty four seven.

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Mumofthree It feels like we live in the same house!!! My husband and children have all but built life around me it feels. I feel lonely and often get angry at myself for having this illness because I was so so active before. My husband is currently having jokes about me to his work mates and family because in a row I said "I didnt choose pbc it chose me". My husband thinks thats hilarious and loves to remind me I said it, whilst giggling of course! My husband and family know how ill I have been with this too> I spent 3wks in hospital with bi lateral PE to the lungs and nearly died! I have severe joint pains and my fatigue is horrific and can sleep for upto 5 day solid (waking for the loo and sips of drink) yet still ignore my pbc. This week I spent a wk in hospital too due to my bile ducts litterally leaking in to my stomach and had to be drained- ouch! Had pbc 2 yr now and Im just 40........who said life begins at 40 eh????

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My mum used to go to my appts with me but my sister caused an almighty row two yrs ago so they don't bother with me now and I don't bother with them. Sad. But I can do nothing about it. When I was diagnosed with PBC by my Rheumatologist I came out and told my mum who said, "Right, I see. Do you want to go to Tom's for lunch." My sister was diagnosed a few months later with the same it was totally different - "she's really ill you know this illness could lead to liver failure". When I said, "I know I have it too". She said, "You never told me". I told her I had and then she said, "Oh I remember you telling me something about your liver, right enough." I wasn't upset or surprised as my sister was always the one who was clever and could have any career she wanted - the gospel according to my mum! I was never gonna be anything because according to mum I wasn't as smart as my sister so I would be the one with children and she would have a career. It turned out to be the opposite. My sister had the children and I didn't. I lost a baby in 1978 and couldn't have another one. When the hospital told me that I just thought right might as well carve out a career as I've nothing else. My husband showed no concern about any of this whatsoever. Later when I developed asthma he would smoke in the same room as me. One night I had an asthma attack and it was all he could do to reach me my inhaler. He turned up the volume on the TV because I was 'making too much noise'. I sat with the patio doors open on the steps trying to get air and he came over and closed the door because I was disturbing him. Another time I was at uni and I had been coughing a bit - it was a really cold day and I told my friend I was going home. I only walked a around the corner. There were no mobiles then and I went into a nearby hotel and asked to use their phone. I called the house and he answered and then reluctantly agreed to come and get me. We came home in silence and then I went to bed. I suddenly couldn't get a breath and I couldn't call out to him. I picked up a shoe and banged the floor with it and he came up. I could see my lips were blue from the mirror door of the sliderobes. He called the Health Centre, it was after 5pm but we didn't live very far from it. My GP told him to bring me to the HC and when I got there he put me on a nebulizer. I could hear this cracking sound and then I realised it was from me. I thought this experience would make my husband understand how serious asthma is but it didn't change his attitude at all. Maybe that's why he's my ex-husband now. Sorry this is so long but just identifying with the fact that there are those who just don't care and they can be family or spouse or partner. That's why sites like this are so important. We understand. :-)

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