Hi again Sometime since I logged in

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eliznew412
Posts: 440
Joined: Sat Aug 05, 2006 7:16 pm
Location: Bristol UK

Hi again Sometime since I logged in

Post by eliznew412 »

Since I've been posting I've moved to Hampshire. Still struggling with a new sense of "normal".
Its been a long road thinking about how my illness made me different from childhood, inspite of the fact that I hadn't reached stage 3 until I was in my 20s.
It goes to show how much the emotional and social side gets affected if you have a lifelong illness. You really do have to put your foot down to get the struggle acknowledged and to "belong" to society. Discrimination in the workplace can be subtle and sometimes downright in-spite of law changes.

What really puzzles me is that it the amount of understanding and support you get from family and friends really does depend on how familiar people feel with your sort of problems. The loneliness and isolation for example of being diagnosed with cancer is being well publicised and who can't identify with the poor fellow in the Macmillan advertisement, shivering alone in the cold. But for renal patients its seems the loneliness can't be acknowledge...why? Its a peculiar British trait that if there is no service or patchy service and no support the problem can't exist or there's something wrong with you as the patient. I've experienced horrendous handling!! I've even been told Im a time consuming nuisance. Even the way that a complaint is handled is grossly insensitive and yep patient blaming. Would we honestly treat a dog like it?

Have had years alone the curious system then offers me counselling!!? Honestly I'm worn out. It just isn't right in a civilised country to be so grossly insensitive.
At least when it comes to family relationships I have got the right to talk straight to them if they are being harsh or uncaring.

After months of hearing nothing from my family my sister sms text messaged me "howz you?". I texted her back "communicating by sms text makes me feel like a charity case or a tragedy sis. so come over and see me and I'll get you a meal and we can chat". I do feel its a British problem about not communicating difficult situations and saying what folks can and can't do to help.

My niece told me that I don't take an interest in them or get involved. It was difficult to explain to her that her mother hadn't wanted me to be an "involved" aunt and there was little joy around me having a son of my own because of the way they viewed my renal disease. It was an awkward conversation but my niece has since learned the other side of her view of me and what the "family" had done to me emotionally regarding my illness from childhood.

Whilst so many plucky aged patients accept dialysis and are lively go getters, they won't necessarily have had their life stages affected. I do feel concerned that the medical profession don't really addres the way their culture can so easily make patients growing up with illness feel at their mercy and cowed under them and as a child of course you comply as you don't want your Mum upset. However there is precious little support regarding the breakaway stage in life and choosing how you want to live. having children without family support is truly lonely and an additional burden. I am that much closer to needing dialysis and now aged 60. It focuses the mind!
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chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Hi again Sometime since I logged in

Post by chrisb »

I know exactly what you mean about family support, or the lack of it.

My partner walked out on me not wanting to deal with 'an invalid". The lasr contact i got from my famil. Was a nasty, mocking and irate telephone call and subsequent letter from my sister (2 years ago). I will be generous and put it down to fear as my cause of renal failure is hereditary.
MatthewC
Posts: 71
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Hi again Sometime since I logged in

Post by MatthewC »

Dear Liz and Chris

I just want to say that I really do feel sorry for you both in your situations. I donated to my brother and we're from a large and yet pretty close family, but even so I don't think any of us family realised just how ill he actually was. The thing is, we just didn't like to ask him even when the transplant operation was booked. Even calling him to offer one of my kidneys was a very difficult call for me to make, and I cannot explain why. I know now that he and his family were mentally unprepared for the operation and the subsequent transformation but in fact the operation became one of those "family events" rather than a private thing that I had to do on my own. What I can see now is that it would all have been much more difficult in a family less bonded and caring than mine, and my heart goes out to you both.

Love

Matthew

PS Writing this I got all teary eyed again - I didn't mean it to sound schmaltzy!
eliznew412
Posts: 440
Joined: Sat Aug 05, 2006 7:16 pm
Location: Bristol UK

Re: Publicity andon emotional effects of renal disease

Post by eliznew412 »

Thanks Mathew for your response. it does go to show that the emotional response with some practical care really does make a huge difference.
I suppose its a 1950s naivety to think of doctors as THE experts. Who would have thought that the NHS and doctors removing a lot of distress from parents could possibly end up emotionally damaging by alleviating that distress from parents and siblings? and yet I think that's some of the problem.
Studying some sociology I now realised the power of what is and isnt' discussed, what is and isn't allowed to be an illness and state provided intervention.
Compounding this with the possibility of transplant and the family now forced to look at their own emotional response to what almost becomes "their" problem rather than just his or hers, just by even being asked the big question - could you/ would you donate a kidney? and the pressure on habitual family relationships is extraordinary.
I used to think that psychologist were pretty deep but having done some counselling training, (not practising by the way), | now realise that actually careful handling is not down to them but again down to the patient regarding donation. Yet there was no one I could talk to about how to handle the topic. Even my GP went all squeamish on me regarding my son possibly donating a kidney.

Oddly enough the whole topic has kind of plateaued along with a very low but curiously stabilised renal function. Kidneys are certainly very strange - they can take an ice age to pack in or pack in with a mere viral infection within a very short time. Honestly since 2006 I must look like a "fake" renal patient and I've had enough time to chisel out my own epitaph 10 times over!

I had to see a private physiotherapist as I also collected severe low back pain which my gp instantly gave up on and told me it was non-specific. However the empowerment of being able to tell the private physio how I felt about my illness, and the more empowered relationship with her was so refreshing. She told me how important the mind is how it puzzled her that even folk with extraordinary disability can sometimes be really quite at peace and "happy". She was a practical help as well and gave me tips on managing back pain.

It can be incredibly petty things that make a condition bearable or unbearable. Emotions are powerful and not always logical but honestly I do think that folk diagnosed in childhood are assisted into repression, initially because of poor old worried Mum and then because of other factors out there. Frankly ongoing repression is downright dangerous. Everyone needs someone they can safely disclose to and it isn't safe to do so unless there is more acceptance of the emotional effect of diagnosis.
Why oh why don't we get the same publicity as the Macmillan Trust give cancer patient. We are every bit as isolated at that poor old chap in the TV advertisement, out in the cold in an a hospital gown. But then ah, of course a nice kind nurse asks him if he's ok and puts an arm round him. Well when I had my "specialist nurse" session the nurse was interrupted 4 times during a 10 minute "appointment" and she was only happy when on her assigned topic "dialysis education" - emotions? well no "treatment" for that. And of course they don't' see the harm, unless it them or their family in trouble.

Doctors loom very large as authority figures for children and they can even be very heavy on a distressed adult and with budget cutbacks, soft skills, emotional empathy etc is the first to be cut back. It shouldn't matter whether your diagnosis is renal, cancer, diabetes, MS or stroke, the emotional effects should be equally published so that patients don't' have to pretend to be saints for fear of rejection or loosing a job.

I have found myself getting less and less "British" since 2006 at end stage renal failure . I've now bluntly asked my sister why she asks how I am - what does she want? graphs, dates of future dialysis. Neither of my sisters helped me with my son when he was growing up and my younger sister didn't even look into donating a kidney and have barely kept in touch over the years. Honestly I don’t' think they though of me as fully "human" ie like themselves and manager style enquiries about my demise at this stage feels insulting. I put it to her that I now needed my privacy and reminded her that if she is upset or feels bullied, that as an NHS manager she has had training in depersonalisation and that she could buy private counselling if necessary, a service I couldn't afford for myself. My categorisation and isolation has been a long time in the making and I can honestly say that for family relationships its devastating. It didn't have to go that way.
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