Interview 47

Brief Outline:

Partner was diagnosed with RA at 33 has had the disease for 17 years.

Background:

Partner' Educationalist (full time), married with three children.

Didn't appreciate the longer term consequences of his wife being diagnosed with RA.

We had, we hadn't experienced really, I mean people talk of stiffness in joints and arthritis we hadn't had experience of what the overall impact this disease was going to have on us initially and I think it's a way sometimes you hide the seriousness of things or you know perhaps become the ostrich and put your head in the sand thinking it'll go away if you don't respect it, it certainly has to be respected when you have it diagnosed and you know if it had been twenty years later and there had been anti-TNF available even you know perhaps when this had started perhaps the deterioration would have been less than it is now but there, that's life.   

Do you remember what you felt when you originally had the diagnosis?

[Pause] Well as I said earlier, I don't think we had the experience of knowing what the long-term outcomes would be, we came, even when we came to this hospital, and saw other patients that had it for a number of years, we weren't fully aware I guess that the deterioration would be to that extent, or I certainly was, my wife may have sort of taken it on board and not been quite so sort of outward going about explaining to me that this is where she thought she might be eventually, and I think you always live in the hope that it won't be that bad and I think you've got to be positive about it's never going to be that bad because if you actually get doomy and gloomy about in the initial diagnosis, of gosh that's the end of it then you know you have to take a very positive approach to it really and just assume that it's not going to, whilst we perhaps know deep down inside that it will get that bad. 

House adaptations have been made gradually so his wife is able to cope.

Yes, I will because I think had this been a road accident and there had been massive changes overnight then I think your adjustment is overnight and the facilities and resources that you utilise within a domestic environment would have to be a radical change whereas I think you learn to cope with a changing scenario that this disease presents to you in terms of the utilities that you may use around the house, my wife can cope at the moment with the stairs but we do realise that either we're gonna move to a bungalow one day or to install a stair-lift and it's the resources around the house that may need modification eventually we, you cope.

You learn to cope on a daily basis and you adjust that coping and capability very slowly because the dis' the effect of the disease is not immediate but you get to a point then when you realise that you are going to have to change, you know we're considering when we change the bathroom considering the height of the toilet [to raise that level so that you know it's not quite so low to get on and off the toilet, that we replace the bath with a shower, or that we put a shower cubicle along side the bath, so there's some independence there and the way that you would come into the house, we've made an extra entrance to the house with a less severe stepping in and also better access to the garden so that we, you know, we can share and do all the things around the house that, you know, we always wanted to do. But the, it's a gradual change not a step change. It's that, that ramping that we talked about. 

Didn't appreciate the longer term consequences of his wife being diagnosed with RA.

We had, we hadn't experienced really, I mean people talk of stiffness in joints and arthritis we hadn't had experience of what the overall impact this disease was going to have on us initially and I think it's a way sometimes you hide the seriousness of things or you know perhaps become the ostrich and put your head in the sand thinking it'll go away if you don't respect it, it certainly has to be respected when you have it diagnosed and you know if it had been twenty years later and there had been anti-TNF available even you know perhaps when this had started perhaps the deterioration would have been less than it is now but there, that's life.   

Do you remember what you felt when you originally had the diagnosis?

[Pause] Well as I said earlier, I don't think we had the experience of knowing what the long-term outcomes would be, we came, even when we came to this hospital, and saw other patients that had it for a number of years, we weren't fully aware I guess that the deterioration would be to that extent, or I certainly was, my wife may have sort of taken it on board and not been quite so sort of outward going about explaining to me that this is where she thought she might be eventually, and I think you always live in the hope that it won't be that bad and I think you've got to be positive about it's never going to be that bad because if you actually get doomy and gloomy about in the initial diagnosis, of gosh that's the end of it then you know you have to take a very positive approach to it really and just assume that it's not going to, whilst we perhaps know deep down inside that it will get that bad.

A supportive family and teamwork as well as mutual support between him and his wife help them...

So I think yeah it's the positive sort of partnership that you know we are there and I mean not only me but the rest of the family are very supportive. The older children are very responsible and very understanding and supportive and fortunately their partners are a part of this big, big family that we have and we have family locally so I mean Christmas Day we sat 19 down to lunch or to, to supper and you know, everybody pulls and gets, contributes to that so I think, yeah, it's all about that holistic sort of well-being together and accepting that some people can't do exactly the same as other people but within a team everybody contributes to that team.

You have a good sense of support?

Yeah, yeah, I mean I'm not the, I'm, the key support, I'm just part of that, that support team really, It's what mec'I guess because you know I have this relationship with my wife then perhaps I'm there 24/7 but you know there are other people around that are willing to come in and support, like her parents who are fortunately still alive. They contribute on a daily basis, in terms of communication, work around the house, my father-in-law still helps with the garden and yeah around the house so, yeah everybody sort of is part of it really. 

So what do you feel has, have been the most important factors in helping you to cope so well with it?

Our relationship I guess really, the fact that [pause] it's happened and we have no control on that happening is not a reason to not be part of it. You need you.. it's, it's an acceptance from my point of view that it's prohibitive to my wife's activities sometimes, but I know that in a positive mental state she is very supportive of what I want to do, so it's a mutual support and respect I guess, that continues to sort of keep this going.