Hi again Sometime since I logged in
Posted: Wed Oct 07, 2015 9:06 pm
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!
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!