How did other people react to your ch... - Children's Liver ...
How did other people react to your child’s liver condition? Do you have any coping mechanisms or solutions to share?
I expect others too have had the experience of mentioning they have a child with liver disease and very well-meaning people, (friends, acquaintances or strangers), telling them, "It's ok, the liver regenerates!" Gently explaining in more detail how cirrhosis affects the liver and the knock-on effects it has around the body can help them to understand. I remind myself they haven't come across this before, (in contrast to me having it continuously going around my mind), they are trying to help and they really do care. I could go on and on but it's very late......!
Couldn't have put it better myself. :0)
I found my family and most of my friends extremely supportive, especially where my younger child was concerned (childcare). What affected me most was that my son's friends stopped inviting him round to play, even though he was fully involved with his friends at school. How do you explain this to a 6 year old. To help my son every week he had a friend round for tea. However since his transplant the invites have started again. I do appreciate that parents were worried something may happen to him whilst in their care, I just wish they could have come and spoken to me.
I was born with a combination biliary atresia/choledochal cyst condtion and despite 7 surgeries still get cholangitis infections. I once had a teacher at art school jump back from me when I called in while on leave with cholangitis--I wasn't even jaundice. I wrote to the school and explained that my condition is not catchy. As a child people won't think your a heavy drinker but as an adult people think your an alcoholic or they try to force drinks on you--I can't drink as for some reason even though cholangitis is a bacterial infection of the bilary system, I get an infection. My Mother used to have a lot of problems with the medical profession not wanting to treat me when I was a toddler or saying stupid things like I would grow out of it when it is a life long condtion.Also because the hospital I was born in threw out my baby notes, I had one specialist who said I should never had had the op at four years old when in fact I did need it and it stopped cholangitis for 9 years.(In his eyes the op I had at 3 weeks old was enough.) Being born in New Zealand, even though it was something of a fluke/miracle that the surgeon I had worked out a novel surgery when I was a baby, I have not had the most knowlegable care however we have a liver transplant centre in Auckland now so things are better but by no means perfect through the rest of the country at least not in my experiance. Your very lucky in the Uk to have excellant liver centres.
I'm sorry parents felt your son wasn't well enough to play, I find friends think I won't want to see them because I am sick all the time but I would love to see people no matter how much pain I am in--it takes my mind off it and I have never said no to someone visiting when I am ill.
I also agree with the first post - and people are such experts on the liver aren't they? So many people I speak to want to try to make things better, and I feel for them, because they can't.
My son is 15 and was diagnosed with PSC and UC earlier this year. I have given as much information as possible to his school - his Head of Key Stage could not have done more. He was due to go on a skiing trip with the school which she was leading, and she was prepared to put in extra coach stops and be responsible for his drugs (which I think is outstanding) - unfortunately, medical advice stopped him from going - it was pre diagnosis so caution was the name of the game.
Keeping her updated has been beneficial - it means she can keep his teachers informed. I don't want him to have a 'get out' clause for working - he has missed a lot of school this year so will need to put in extra to get good grades. She has looked at his timetable to see what he can drop and where extra support can come from. Don't get me wrong - getting his GCSE's is not the be all and end all - but while he is well, which he is, he should try to do the best he can. His future will be hard enough and he needs to give himself as many choices as possible.
i went through the denial stage at the first then come to terms with it quite quickly, but i have found my way of coping has been to inform other people all about the condition so they can pass it on to others that they know. ive also found it useful getting to know other parents within the hospital as a support and CLDF are brilliant.
I, like Lynnhun, have had the same reaction to my child, which I found hurtful, but then on having a discussion with a friend who has a diabetic daughter where we were both saying we would both be scared to look after each other's children in case something happened that I gained a better understanding of how people feel. He's got some close friends whose parents have approached me with their worries and having set their minds at rest, they have had him over and the usual reaction is 'you would never know...'! I try not to make a big issue of it as I want him treated normally, but, people generally are just incredibly curious. Some of the questions have really made me chuckle. Some have been insensitive. I just try not to get offended.
My daughter has billary artresia and is 6-months post-transplant. She is our first child so we don't have another to compare the experience with but while most people are very supportive some are uncomfortable with our situation. Some friends and family that were close before have drifted away because of this, while others have become much closer. I think serious illness in a child can be a difficult thing to relate to for many reasons - lack of understanding, not 'knowing what to say' or fear of 'saying the wrong thing'. I also think there are strong expactations in our culture that it is somehow wrong, tragic and/or unbearable for a child - particularly a young child - to have to face death or permanent ill-health.This makes it an even more difficult issue to deal with. Yet India's experience has helped us realise that lifelong and serious illnesses are a reality for many familes and their strength, courage and willingness to face and come to terms with their situation is an inspiration.
What we find supportive is when others seek to understand India's illness and respect what it means for us but we don't want them to treat or see us any differently. Personally I think that the worst thing you can do is feel sorry for yourself - and especially your child - or as though you are a victim to your circumstances. Other people will react this way towards you but it's important not to buy into this. This can lead to people being dismissive, insensitive or over-reactive as they only see the illness - not the person who is living with it.
I think we all understandably have moments where we do feel this way but it can be very undermining and disempowering to cling on to these attitudes in the long-term. Illness is not a curse - it is part of life - and I think you can learn to live with it by caring for yourself and your family - and a good network of support to help you along.
