Guest post: "My mother didn't tell me I had a rare kidney disease"
Children shouldn't be defined by their illnesses, says Jess Bancroft - who believes her own 'happy oblivion' helped her stay well through childhood
Posted on: Tue 15-Dec-15 12:32:05
(16 comments )
When I was two, my mum was told that I had a rare kidney disease. My kidneys were leaking proteins, the doctor said, and in the next few years I would require a transplant.
Contrary to most medical knowledge, and to the utter bafflement of my consultant, I remained stubbornly well for years. I never showed any symptoms, my levels were bang-on normal, and you would never have known my kidneys were persistently and ominously leaking protein. Unfortunately, my life as a medical miracle couldn't last forever. Last summer, at the age of 23, my dear wee kidneys ceremoniously and spectacularly failed.
These latter days, however, are not the point. When I think about how I managed to stay persistently well throughout childhood, there is only one thing I can attribute it to: my ignorance.
When I was growing up my mum wouldn't tell me what the hell was wrong with me. She absolutely, point-blank refused. For years - until I was almost 14 - I just had a 'funny tummy'. How vague, child-friendly and incredibly annoying of her. Although her adamant silence caused some friction between us in later years - my interrogations almost always ended in nothing - I strongly believe that this approach secured me a free childhood.
I was always treated as if nothing was wrong with me; I didn't have a specific ailment or bodily area to focus on, so I couldn't manifest or worry an illness into being. I honestly think that because for so many years I was happily oblivious of exactly why it was I was going to hospital twice a year, I never gave my body the chance to act upon it. I thought I was well, and so I was.
I was always treated as if nothing was wrong with me; I didn't have a specific ailment or bodily area to focus on, so I couldn't manifest or worry an illness into being.
This might sound far-fetched and fanciful - and of course, it isn't universally applicable - but I would argue that the mind and the body are far more linked than is currently commonly accepted. My mum's approach wasn't necessarily flawless - I wouldn't recommend withholding information if asked, for example - but I know I didn't need to know anything more than I was told, at least when I was very small.
I remember when I was first told that one day I would need a transplant - the very idea of it seemed so preposterous I scoffed it off and actually forgot about the words until years later. I was 18 and was moving from my consultant at the children's hospital to someone in an adult ward. A senior consultant pulled me aside and asked if I knew what was going to happen in a few years' time. I said no, and he said that one day I would need a transplant. I left upset and a bit bemused, but largely thinking he was mad. Although I see the merit in what he did, had I spent the next few years worrying, rather than ignoring (and in fact, forgetting) him, I think I would have seen those years as wasted. You can't hold back the tide, and all that, so why worry about it?
Even now, on dialysis, I still do not regard myself as 'ill'. I believe that if you label yourself as something, you are psychologically more susceptible to embodying it - and putting inverted commas around the word is my way of making sure it isn't free to stamp all over my writing, or all over my life. Maintaining this control is incredibly important as a child. Being the only one singled out for regular hospital trips can make you something of an 'other'.
As adults, we're easily burdened with worries, dreams and plans for the future, whereas children have the innate luxury of living in the moment. They are incredibly stoical, and have the amazing ability to just 'get on' with things. As a result I do not have any bad memories relating to my 'illness' - in fact, it was all rather fleeting and unimportant. I had my bed, I had my family, and my moments in hospital were routine and unremarkable.
A childhood illness needn't define someone, and shouldn't. We are all more than our bodies and those who experience life in hospital early on are only made all the more resilient for it. Life on dialysis has its difficult moments, but I wouldn't trade a lifetime's bill of good health for the stupendous perspective that I have gained through this journey.
By Jess Bancroft
Well Done your mum, mind over matter is a great thing and I believe if you can alter your thinking it can only have a positive effect on your health. I wish u well and all the positive luck in the world.
Whilst I'm pleased that you sound secure and confident in your mothers approach, please understand that having an ill child is never easy and other parents may not be able to keep their child in blissful ignorance.
I have a child who isn't defined by their medical illness but it has a huge impact on their life and means that it is part of who they are - the illness means that we are often in hospital regularly and for long periods of time. It would be lovely if my child could stay well enough to live in ignorance but that would be doing my child a disservice given the level of hospital intervention needed to keep my child going.
My child will eventually need a heart/lung transplant and at 11 knows this may be an option in the next ten years. He had to know because he has been so unwell, that not telling him would mean lying to him and I don't agree with that approach. Equally we don't dwell on any potential long term plans as we prefer to live or the moment - making short term plans for Christmas, holidays next year etc.
If i do have one wish it's that my child will not resent his troubled childhood but see that I tried to make some very good times, especially as we have experienced some very dark times.
Best of luck with the transplant - I know how hard the dialysis process is and I hope you get a kidney soon.
Wishing you well
My son has a similar condition, as do many other kids in the various support groups we are in for mcns/fsgs. I wish it worked that way, but it doesnt. The only thing that has stopped the relapses so far is really nasty medication. Without that, he'd be dead, positive thinking or not. I have had to make many decisions about his treatment with rather nasty medication. In fact he almost died before he was diagnosed, as his loss of protein left him so vulnerable. I cant really agree at all with the idea that his illness is manifested into being by his thoughts, although it is an attractive idea that offers an aspect of control.
I am really pleased you are not negatively affected by your childhood illness and current experiences. I am happy to say my son seems the same. You are right,children can be very stoic. Also, everyone tried so hard that he actually has many happy memories of times in hospital. He also likes skivving off school for the hospital appointments. I am forever grateful to all the people who worked so hard to make this the case.
Most of that worry of course was done by me, not him, and my health has suffered a lot because of the constant stress for years of his childhood. I am really so pleased he doesnt seem at all aware of any of this. He doesnt really ask many questions, even now, and we dont offer extra info unless he asks.
I hope you are soon able to get a transplant and move off dialysis soon if this is an option for you. Wishing you all the best
This is interesting to me because although there was a rare liver disease in my family, I was symptom free and advised not to be tested for the disease. At 24 my liver packed up and a month later I had a transplant. In some ways I understand what the poster is saying. If I'd have known this was going to happen would I have had a carefree adolescence with festivals, university, moving away from home? Would I have used my illness as an excuse to miss PE and generally not do things I didn't like? As I was I was happy and ignorant.
However I don't think my ignorance had anything to do with why my symptoms didn't show until I was critically ill. I was just lucky.
I wish you all the best and hope you manage to stay well.
Why did OP think she was having all those regular hospital visits from age 2+?
Must have noticed that her mates didn't have regular checkups for 'funny tummy'.
This has reminded me of a friend I had at school who had a heart defect. She knew absolutely nothing about it, even though she had been to the hospital and had ECG etc. She was just young enough not to question. And then one summer she had to have surgery, and she just calmly announced that she'd. Had a heart operation over the summer. .
Obviously if a child is symptomatic and already seriously ill/receiving treatment then it isn't possible to keep these kinds of things from them. But similarly I can see why a parent would choose not to tell their child that they had a life threatening condition if they weren't showing symptoms at that stage.
While I wouldn't necessarily say that mind over matter keeps someone well if they have a serious illness, I do think that it can make someone. Ill if they have the chance to dwell on the possibilities.
Brilliant and I believe it true too. If you can avoid telling a child it's a good idea. Best of luck with your treatment and stay positive!
Do/did you have a type of nephrotic syndrome, Jess? It's such an individual illness, every person seems to have their own path they follow, really hard to predict outcomes. Can you tell us more about your childhood experiences of it? It's interesting to see the other side of things. In particular, if you were on high dose steroids, or second/third line treatments did you feel this affected your childhood and what made it easier? Thanks
Advising people with health conditions that mind over matter is based on scientific fact is quite frankly dangerous. I don't think this should be on mumsnet at all.
You would have had Drs appointments. Medicine would probably have been hidden in food.
I really feel worried that someone will read this and not give their child medicine based on some untested theory.
I'm glad you are ok. But you state yourself that your mum hid things from you. Possibly your own medication and other treatments.
If there is a physiological deficit in your body then no amount of thinking happy thoughts is going to change your condition.
At some point I should really tell my son about the possible long term consequences of the second line treatments he had, such as future fertility issues. We made the decision to risk it, as the risk was not too great for prepubescent boys, but of course he was completely unaware and we didnt discuss it with him. When would be a good age? Did your mum talk to you about it when you were older or did she ask the doctors to do it? What do you think is best?
You seem to be taking credit for staying medically well through a positive mental attitude, fostered by your mother's decision to not tell you about your condition. There are some very problematic implications to this: that people can control, and therefore have a responsibility, to control medical illness; that parents should consider withholding information about their children, from their children; that knowing about a medical condition will exacerbate it, amongst others. Whilst it is true that having illness or a chronic condition is likely to have psychological sequelae, for most people, facing these, and having support to understand and manage the effect of illness on their lives, as much as is appropriate for their age, is going to be a healthier psychological approach than keeping them in the dark. In your case, maybe there just wasn't much need to focus on it, as the impact on your life wasn't that great. Everyone one is going to die one day, but we don't keep reminding kids of that regularly as that would raise anxiety unnecessarily.
Great that you think not knowing about your leaking kidneys managed to stave off biology and a transplant, it is not unheard of to get to your age, you are not the only one.
Quite dangerous advice to give.
I had a condition from birth that was missed until adulthood. It affected my whole social identity and my relationship with my parents. Always feeling unwell/I'll couldn't do anything with peers, but assuming everyone felt like i did but they were better at living their lives than me. It affects relationships with parents completely now, and also with doctors.
Nephrotic syndrome sucks. Sorry to hear you had such a huge relapse at 23 and wishing you well on the transplant front.
Were you medicated without your knowledge? I find it hard to believe a neph would be ok with that.
I do know that a lot of the adults who live with, and parents of children who live with NS and it's associated maladies, endless drug regimen and paraphernalia may find this post a little offensive, as for most of us mind over matter is just not an option and horrible drugs really are, but I am glad you managed to stay healthy for so long.
I hope that your long history of not being medicated for a disease that slowly but surely scars and degrades your renal tissue is not the reason you have become ill so spectacularly and now require a tx instead of first/second line drugs. Have you discussed that with your neph/mum?
I'm sorry op I fundamentally disagree with your post and with your mother's actions which were reprehensible in my opinion. Keeping children in ignorance is no way to manage a chronic illness. Information should be given in an age appropriate manner throughout the course of the illness and the child encouraged to take responsibility as far as is possible for their own treatment choices. You were given none of that.
The rate of graft loss (failure of transplanted kidney) in young adults has been shown to be worryingly high. We know young adults struggle to manage their condition. I find it very hard to believe that your paediatric renal consultant thought this was an ethical course of action to pursue.
Regrettably end stage renal failure is a life limiting condition although I very much hope you will have short time on dialysis and then a very long life with a good transplant. You have a serious illness which will impact on your life choices and your mother had that from you. In doing so she also protected herself from the situation and I don't think that was the right thing to do.
Falling kidney function varies from patient to patient. Some will trend downwards steadily. Some will plummet after long periods of stability. Your experience is not unusual in that regard but I hope it is highly unusual in terms of what was kept from you.
Now you are on dialysis how do you find you cope with the dietary and fluid restrictions?
I was born with a genetic illness, but wasn't diagnosed until I was in my 20s. So I spent my childhood with weird symptoms and no idea why it was happening. It didn't get really bad until my teens though.
I think my having known what was wrong and why would have empowered me, having also been in the position of ignorance. You're right, there are probably things I wouldn't have done had I known what was wrong - but not doing those things also would have saved later damage and other issues.
I wouldn't have felt so bloody lost and confused when I suddenly became so bad as a teen, and doctors were shrugging their shoulders. There were lots of things that could have been done to make my life easier, with the benefit of knowing the condition, even really simple things.
I do think the mind has a large role to play, but I also hate this 'just be positive' attitude and all will be okay that comes into play with chronic illness. I understand it isn't what you meant, but it comes up so often, it makes those of us that have a more normal outlook (fine with it some days, struggling other days) feel bad we can't always be smiling and positive all the time when we have to live with it for the rest of our lives.