DIMENSIONES Articulación y

T3 Subordinate theme a: Public profile of ESRF

The public profile of ESRF was an issue for participants. There were frustrations about having a chronic illness that very few people had heard of or had any knowledge. John illustrates this and his frustration at the situation below:

John: The whole kidney thing it’s just so small no one knows anything about it. I think that’s where it’s wrong I think...it...needs to be brought out a little bit more...because as the... you folks say there’s more and more people coming onto it but they’ve no idea. (Pg.19, 485- 488)

Participants described having to educate friends and family about their illness and cope with people minimising their condition, both due to its low profile and the lack of obvious outward symptoms. Some participants compared it to other conditions as a way of establishing how other conditions had gained a certain status. Cancer was the most frequently cited but one participant also gave the FAST campaign for stroke awareness as an example of how the profile could be raised:

John: I do think , er…as I said earlier on I think the main problem is, is that there’s not anything out there... you know...you hear about you know I mean obviously they’re all horrible ..obviously you’ve got your cancers, strokes heart attacks, diabetes and things like that [sighs] and you just… you don’t know

anything there’s nothing out there in the world that’s telling you to get this checked like that advert for a stroke...the FAST is it? (Pg.18, 462- 468)

Peter felt the lack of understanding of ESRF had had a serious affect on his ability to access the benefit system as is illustrated in this account:

Peter: So that’s why I’ve gone back to college to retrain er… because I don’t feel that I’m getting the support from the correct people that don’t understand, that don’t know where to put you within the benefit system… cos obviously some people are working, some are not, some are well, some are not so… so there’s no… you’re not… oh he’s got kidney failure we’ll give him these benefits, here what he’ll have… it’s oh how well are you? What can you do? What can’t you do? (Pg.17, 418- 425)

However, some participants reported shying away from sharing their diagnosis with others unless absolutely necessary. There was a conflict between others not understanding and the frustration of this and wanting to remain private or not marking themselves out as different to others. This is illustrated by Sandeep’s experience of sharing his condition with others in his community:

Sandeep: …and if you tell someone, you know, I’m not allowed this food they don’t understand, well Asian people don’t understand any way, they totally don’t understand. It’s er…really frustrating... I get the feeling Asian people don’t want to know if you’re ill. (Pg.7, 158- 162)

Recognition of the lack of knowledge and understanding beyond the immediate renal community was echoed throughout the cases. In these accounts the men describe the lack of available information, here Peter describes the little

information people might know and relates it to people’s failure to recognise the impact on his life:

Peter: it just seems to be… like if you went and spoke to Joe Blogs off the street and said if I gave you renal failure what’s the first 3 things that come into your head and a lot of them would probably say it was an old person illness a lot would say, when your transplant due [Laughter] er… and then they’d probably know dialysis but they wouldn’t know anything else. What impact it makes on your

life…erm… I mean it’s very, very hard … so the level of understanding people have is non-existent, there isn’t any. (Pg.18, 454- 463)

T3: Subordinate theme b: Tangible illness

‘Hidden Diagnosis’ is further elucidated by the second subordinate theme, tangible illness. Participants often commented on the invisibility of their illness as a

drawback, although the men appeared to appreciate being able to choose who they shared this with. Looking well or not being able to show someone their illness was described in terms of having to prove their illness to others. This frustration with lack of visibility was mixed with a personal resistance to define ESRF as an illness, with most preferring the term condition, those who did see it as an illness however, would not use this label to others also preferring the term condition. John describes his view of diagnosis and those with ESRF appearing well:

John: I don’t rate it as an illness you know there are illnesses you know out there but if you look out there [points toward unit] some of them look quite alright you wouldn’t think there was anything wrong to look

know if you look at cancer patients they...look like there ill whereas I don’t think none of us do half the time depending on the day of course but I don’t think it’s an illness I just think we...it’s a condition we have. (Pg.8, 194- 201)

Peter also highlights appearing well and the lack of tangible illness for ESRF but he goes on to further make this point with examples of visible impairments

Peter: Cos on the outside I don’t look any different from a normal person it’s not like I’ve got a limb missing or something, you take a leg of or an arm off or if I lost an eye… looking at me there’s no

difference, they only difference is my arm where the needles go. (Pg.13, 309- 312)

In summary, there was a conflict between the negative and positive aspects of ERSF being a hidden diagnosis. Overall the frustration at the diagnosis having a low public profile seemed to outweigh having the choice to share the information.

2.5 DISCUSSION