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Alport Syndrome

Alport Syndrome and work

People frequently talked about the importance of work in relation to their lives and living with Alport Syndrome. The people we interviewed worked in a variety of jobs from construction, IT, banking and finance to education, legal services and healthcare. Some were still at school or studying at college or university. Many people worked full-time whilst others had changed their hours at work and were working part-time or had given up work due to ill health. 

People spoke about having fatigue and tiredness at work particularly if they were experiencing kidney failure or doing dialysis. A few people said they weren’t sure how they coped at work and often struggled. Despite this, people spoke about the importance of work in relation to their self-worth and identity. Angela and Richard Y said they felt work gave them a purpose and a focus. Others said work was a distraction. Robin felt it was critical to him and his family that they “continue to have a life and a career and everything else outside of the illness”.
 

Paul says he feels it’s important to have something to fight for and a constant like work.

Paul says he feels it’s important to have something to fight for and a constant like work.

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Paul: Yeah, you've got to have it. You couldn't do it on your own. There's now way. You'd crack up. You'd crack up big time. You have to summat to fight for. You have to have something in your future, ie the kids, and - and the missus [laughing]. And holidays to look forward to.

And you have to have something constant in your background all the time, ie work, to make you get up every day and fight, to keep fighting for. Yeah, you've got to have something to look forward to.

And you have to have something constant in your background all the time, ie work, to make you get up every day and fight, to keep fighting for.

Christine: And you've always had something. You're a big sort of diary person, aren't you. Always have something like a, you know, a month ahead that there's a something to look forward to, and do something. Meal out with a friend, day at the beach, or whatever it is, isn't there.

Paul: Yeah, you've got to have something to look forward to.

Christine: Forward-thinking of nice things.

Paul: If you don't make them, if you feel rubbish or whatever, or you're ill, you find you can't do them. But if you've got them in the diary, you've got something to look forward to, so.
People spoke about the importance of having a supportive work environment. Sammy said she was given a room at work to do dialysis. Paul said work were flexible with him having time off to go to hospital appointments. Angela was sometimes able to come in a bit later in the morning when she was dialysing overnight. When Debra was pregnant she worked for a big bank that allowed her to attend lots of appointments. Working for a big company was seen as an advantage because they were more flexible. Robin felt that more adjustments were made today in the workplace compared to 30/40 years ago when he started his career in the financial services.
 

Dee felt her company supported her when she started making mistakes at work.

Dee felt her company supported her when she started making mistakes at work.

Age at interview: 51
Sex: Female
Age at diagnosis: 48
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I was that tired, I was pleased. Usually when I'd been off work ill for anything, after a couple of days you're fed up and you're bored and you want to get back to work. With this one, I was off, and I was like "Oh gosh, thank goodness." Because I were just exhausted. I mean, I was at work and I drive buses, as I say, and the week before I finished on sick, I was pulling in to say a bus stop, and I was catching the kerb. You don't think that's much, but it is when you're driving a bus. You know, you've got to be - everything's got to be perfect. And I caught the side of a bus stop sign. I mean, that sign had been there for donkeys' years, so it wasn't the sign's fault, it was definitely my fault. And it was little things. I was making little mistakes. And I said "Oh hang on a minute, I don't want to be doing this, because your mistakes - little ones will lead to bigger ones." And at the end of the shift when I was coming back in, I was exhausted. I mean, I was so tired, and I knew I wasn't competent enough to carry on. You know? So I just said like you know, "I can't do this." And they said "Well don't finish. Let us go through the process." And of course [company] is such a big group, they backed me up all the way, so it was great.

Yeah, how did you feel? Did they support you?

Oh, yeah. They were incredible. They really were. When I was off on sick and things like that, they were absolutely smashing. You know, I had go and see the management - after you'd been off so long, you'd to go and see the management and things like that. He was the one that advised me what to do, and - you know - absolutely spot on. 

Yeah, what did they sort of say? How was the conversation?

They said they'd be sorry to lose me, but obviously they felt it was in both of our best interests, because I wasn't safe. And I knew I wasn't safe driving the bus. I wouldn't have gone back to work anyway. Either one way or another, I was going to finish. So when they retired me, I was really pleased about that.
 

Paul says his work have backed him ‘all the way’ through 3 transplants and 17 years of kidney dialysis.

Paul says his work have backed him ‘all the way’ through 3 transplants and 17 years of kidney dialysis.

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Christine: Yeah, you've never - never gone through a period where you've wanted to sit at home and feel sorry for yourself, and be ill. No. You've always worked.

Paul: But that's also because of the support I've had from my employer. I've been with the same person, same company, for 32 years, since school. And they've backed me all the way. And I've been there through two failed transplants, two new transplants. Eighteen, seventeen years of dialysis. And that was leaving work early to go and dialyse at the hospital. When I was on CAPD they provided me with a room with a key, to put my storage in and actually go and dialyse in that. In fact, they actually commented that it's harder to keep me out of the office, [laughing] than get me into it, so.

Christine: So you've been very lucky there, haven't you. Because when we say you've worked full-time, that's probably not easy for a lot of people out there that have gone into renal failure, and on dialysis and things, because if you haven't got that backing and support–

Paul: I totally understand how people can't do it. I totally - my brain set was just get up and go in, whether I felt rubbish or not. It was a case of getting up and doing it, and you'd feel better or you'd be keeping your brain going. Even if I felt rubbish at work, I'd still be there doing it. It's - that, it was kind of a backbone for me. 

Christine: Yeah. Yeah.

Paul: For those years, through everything. It was - it's been there - as much as kidney failure has been my life the whole time, well [supermarket] has been in there, in the background the whole time. They've backed me left, right and centre. There was one instance straight after my third transplant - and it happened with the other two, as well. But two weeks after my first, my third transplant, we got a call from my manager saying "Don't worry about pay, you're on full pay no matter how long it takes to come back." Now, that just - pfft - takes the weight off your mind. 
 

Steve’s workplace allowed him to work from home throughout dialysis and transplantation.

Steve’s workplace allowed him to work from home throughout dialysis and transplantation.

Age at interview: 37
Sex: Male
Age at diagnosis: 3
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With the job that I do I normally I have to be in an office; normally I have to interact with people, well at least I did at the time, the general public. I was very, very lucky in that I'd just started a contract somewhere and it was the second day that I had the job that I was diagnosed and started hospital. So, I was a self-employed contractor at the time so, normally when… couldn’t work is they'd ask you to leave and they'd find somebody else to replace you. The place I was working for were very kind; they gave me a laptop and they said I'd be able to work from home. So I changed the nature of the job I was doing with them and worked from home for throughout the whole time. So it didn’t affect my work at all, through all of the dialysis and transplantation, I was working from home so that was really good. Socially it had a massive impact on my life. I moved a distance from where most of my friends and family are a number of years before I was diagnosed, and I would often go into London on a weekly basis, if not every other week, but I didn’t really have any energy for that at all – concentrate on driving and just kind of going out and about, it wasn’t really a realistic thing. It was, yeah it was tiring so.
People also spoke about how they themselves made adjustments at work, particularly if they had hearing loss. Kevin said a digital hearing loop helped him hear students when he was teaching. People said they did other things like sit at the front in meetings. Some people said they had changed jobs to be closer to home and so less travel time meant they felt better and more able to cope with their jobs. Living close to hospital made going to appointments and check-ups more convenient.
 

Alison prepared a work folder for her colleagues before she had her transplant.

Alison prepared a work folder for her colleagues before she had her transplant.

Age at interview: 33
Sex: Female
Age at diagnosis: 20
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Can you explain a bit more about sort of work, and how you managed?

Yeah, so. We did try before the, that I got - before I got the call, to sort of manage my workload in the event that I got a call to go for a transplant. So I had made up a sort of, a folder of 'this is what I do, this is where you can find this', and that sort of thing, so they'd be prepared. They say once you have the transplant, you could look to being off work for two to three months. So I was fine to go back after the two months. To be honest, I felt like I could have gone back a lot sooner, but - you know - it's best just to, to try and relax and take it easy and recover at home. But they're, they're really supportive. And I guess it helps that my workplace is based on a hospital site, so I'm literally five minutes away from the renal unit. So yeah, they're - they're really supportive. And being a [workplace unit], it's - you know - they're, they support it a hundred percent.
 

Robin said he did lots of extra preparation before meetings and presentations at work so he didn’t get caught out.

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Robin said he did lots of extra preparation before meetings and presentations at work so he didn’t get caught out.

Age at interview: 62
Sex: Male
Age at diagnosis: 26
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One of the things that comes to mind is professional life more than social life, [what] immediately comes to mind is that I suppose I’m much more, have become much more reliant or tended to make sure I was better prepped. So if I was going to a conference or a meeting or presentation to make sure I made the effort to read everything that was available. You know the handouts, the presentations. You kind of know, you’re not always necessarily going to catch everything if it’s a presentation or a conference or whatever. So if you’re better prepped and you know a bit more what is coming and you read the materials and so forth you can kind of compensate for that to some extent. And that kind of, that’s kind of something I suppose I’ve done over the years. So I’ve always got a bit cross with people who go along to these things and obviously haven’t done any of the pre-work or whatever, done any of the reading and so that’s something you tend to do. You tend to, raw material.
The demands of work had been very difficult for some people. For instance Diane said she struggled to hear people at meetings, Dee said that she struggled to hear passengers when she was driving her bus and Paul found it difficult getting up and going to work the last five years he was on dialysis. Amanda said that at one point her son had so many appointments she was in a daze at work and felt she could easily have made a mistake. Angela found having children and a health condition together meant that colleagues perceived her to be out of the office more than other workers. People also spoke about periods of unemployment and feeling depressed about this.
 

Alan felt very disillusioned when he tried many times to get work after his transplant and wished employers would show more compassion.

Alan felt very disillusioned when he tried many times to get work after his transplant and wished employers would show more compassion.

Age at interview: 49
Sex: Male
Age at diagnosis: 19
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I was geared up to get going, to get back in a job, and to feel good about myself, you know? To be independent. And it was knock-back after knock-back, you know? I don't think there was enough compassion out there with employers, that could see my circumstances. I felt as though I'd really, you know, fought hard - you know - to try and get out there, and I was just getting knocked back. And I felt very disillusioned. And it got me depressed. You know? Yeah.

What were you hoping to do, in terms of a job?

Well I'd gone into engineering. I'd been to university to get a degree, I'd got that, and still nothing.

Yes. I mean, you know, normal life is working, isn't it? You know? Accept the fact that I'm not working, and I'm not bothered about it now. You know? I used to have this hang-up about not working, 'I'm not going to meet anybody because I'm not working'. Because I had, I felt insecure, you know? But I had a damn good reason. Even though I tried to explain it to people, they just, you know, they just didn't understand. You know? And it, you know, it built up a frustration. And it, you know, it'd get you down. But I've come to terms with it, you know? So I mean, like I said before, I'm proud of my achievements. You know? But I mean, I wouldn't you know, I wouldn't go back into education now. I've had enough of that [laughing]. I've been on course, courses, you know? I've done enough now, don't wanna be doing that.
 

Kevin felt his life was ‘paused’ and he got quite depressed when he was out of work.

Kevin felt his life was ‘paused’ and he got quite depressed when he was out of work.

Age at interview: 42
Sex: Male
Age at diagnosis: 6
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And so I then realised actually all the things that I'd been feeling are because of the deteriorating kidneys. And so I'd already stopped working. I was half-heartedly trying to find another job, but I knew really that I wasn't gonna be able to manage it. But I didn't - I hadn't settled myself with the idea that I wasn't gonna work. I think part of me knew that I wasn't really up to it, but another part of me thought 'well that's not an option, you've got to work, everybody works'. But once I started on dialysis, I think I just kinda settled with the idea that I'm just gonna have to manage this now as it is. So it was the financial issue that was much bigger than the health issue, for me. Because I'd gone from - you know - I'd always been independent, always had my own house. And always, you know, had the lifestyle that I wanted. And suddenly yeah, I had a lot less money to manage on. And that was a much bigger deal than - at the time, anyway - than the primary health issue. So that took some getting used to, more than anything else, the adjusting your lifestyle to a more meagre income was - yeah, that was a much bigger deal.

I mean, I felt that - you feel almost like arrested development. You just feel you're just kind of paused. And that, you know, you're not really functioning on any significant level, until - you're just kind of waiting for the next chapter, if you will, this is just a big pause in your life. But yeah, I mean, I did find it really stressful, just not being able to, to use my brain to do anything useful. And also not feeling a bit - even if the opportunity had been there, not feeling that I could do it. Because I was just so tired all the time. Yeah. So, you know, most of the time it was okay but yeah, there were some - there some times when it was quite, you know, quite depressing.
Some people, like Alan felt employers lacked compassion and he would have liked more support and understanding from them. People spoke about feeling pressure at work and not having allowances made. Richard X said that although his current company was very caring, previous employers had not been like this. Angela said that whilst her company had been understanding in many ways, there was little leeway when she returned after her transplant and people expected her to be back working full time. People often spoke about taking time off for their transplant surgery and this ranged from a month to several months depending on recovery.
 

Mary, Philip and Karen say that Anthony’s job was very tiring physically and also that he was bullied by some work colleagues.

Mary, Philip and Karen say that Anthony’s job was very tiring physically and also that he was bullied by some work colleagues.

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Philip: I think a lot to do with it later on, he was doing a manual job, and it was hard work.

Mary: And he found it –

Philip: I know, because I worked with him for a few years. Went working in –

Karen: He said to me, you know, "I just want to come home [name], I just wanna, I just wanna sit and just sit with my kids. And I don't really wanna go out, because I'm tired. Tired."

Philip: It was really tiring. And I think sometimes he tended to be a bit rebellious sometimes, and they would give him harder work then. Especially when he worked for the local authority. They had him putting fences up in the pouring down rain. Digging holes, and - and - which, is –

Karen: His job didn't help his condition really, did it.

Philip: Yeah. He had to, he had to do the job to keep the job. But the people who he worked for didn't take it into consideration, and didn't help.

Mary: No.

Mary: Such physically –

Philip: And the management, especially.

Mary: Yeah.

Yeah, really demanding job.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: It's about, it's about recognising people have got a disability isn't it, when you -when you're at your workplace. And I don't think the people - the nature of what he did, I don't think the employers did that really.

Mary: No…

Philip: No, no. No. 

Mary: No.

Philip: No, but I mean he did that because obviously he wanted a wage coming in. And he had to keep doing it, to get the money coming in. And especially with a young family, and. But it was definitely the wrong type of job for him.

Karen: But I think the nature of the industry that he worked in anyway, a lot of the employers that he worked for. You know like if he worked for the university, we've got an equality act, we've got to compensate for people that have got disabilities.

Whereas some of the employers he worked for, and he did a lot of agency work, didn't he.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: He wasn't getting that kind of support. So he had to just fit in with the lads, and then work with them, doing with whatever they were doing.

Philip: Well he'd to do, you'd to do the work whatever - whatever they gave you. This is where I went working with him for a while, and you'd to do what they told you. And they used to give you all the rough jobs anyway. It wasn't a nice job.

Mary: Well I think like you say though, Karen - as you're older, them kind of jobs are just not for you, when you've something wrong with you.

Philip: Definitely the wrong job.

Mary: Definitely…

Mary: Yeah. That's it. A lot of different things were just going wrong with his life.

Philip: And, and I didn't realise when I did go working with him, - don't know if it's relevant to this or not, but - how much stick they did get, when he, when you work there. And there was one lad who, who worked there - there was only about ten people worked there. And he was singing songs about a mute and whatever. You know, this is what goes on. And you start with arguing against it, and then they just make it harder because they give you more jobs and whatever. Like I said, I couldn't put up that, I definitely couldn't put up with that.

Mary: But he didn't really have an option, did he, because he had a family.

Philip: But he had to keep going because of the money, yeah. But I, well I finished, I just left. Well not that I were ever employed there, but I - but I just walked out, I couldn't be doing with it. Wouldn't have done for me.
 

Richard X didn’t feel his previous employer was particularly understanding.

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Richard X didn’t feel his previous employer was particularly understanding.

Age at interview: 39
Sex: Male
Age at diagnosis: 9
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Yeah definitely because it’s hard to sort of its hard to break that sort of news to somebody and you don’t do it unless you’re really ill. So you don’t, you don’t, you know, outwardly you don’t say I’ve got this that and the other but when you’re ill obviously you have to because you’re off work and you have to explain yourself. But it’s really helpful to have someone that understands.

Yes, have you had that with previous employers?

No [laughter].

Do you mean like that just didn’t understand, or didn’t give you time off or?

It just always felt, it’s not that they were saying anything necessarily but it was always, you always felt pressure, so it wasn’t like they made you feel relaxed to, you know, to be able to go to appointments and things it was more you always felt like you needed to be back and they were clock watching.

And didn’t understand why and?

Yeah sort of didn’t trust you as you were, yeah.
People didn’t always tell their colleagues about having Alport Syndrome – some people said they didn’t want to share details at work. Paul said his colleagues were “gobsmacked” when they found out he had gone through transplant surgery. Angela said people at work were shocked when they found out about her doing dialysis and having a transplant. 

People talked about the financial pressures and implications of work. People said they had pressure to pay their mortgages and rent, as well as worries about losing their jobs. This impacted on where they lived and their housing situation. Kevin said he found living on a lot less money during dialysis very stressful. Angela said she was now working part-time and her husband was the main breadwinner which she felt was difficult as she had always worked full-time. Mary, Philip and Karen said Anthony had to keep going with his job despite it being too much because he had a family to support and mortgage to pay.
 

Sammy describes the struggles of managing work and finding a place to live whilst having miscarriages and kidney failure.

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Sammy describes the struggles of managing work and finding a place to live whilst having miscarriages and kidney failure.

Age at interview: 36
Sex: Female
Age at diagnosis: 17
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Then he [husband] managed to find a job there [supermarket]. And I was working as well, he was working. We weren't making loads of money, but we were getting by. And we, you know, had our own place to rent. And then we were - I was on the council list. Because I was on the housing list in [place], so I was on that when we moved here as well, in [place]. And then when we rented we got private landlord, he kind of like kicked us out. It was like he wanted to get rid of us. But I kept getting pregnant, and I was going through this. I don't know what happened. I think after my miscarriage, when I was pregnant, the council were so close to giving us a council place, because I was living in such cramped conditions, because we couldn't afford a whole place, it was a shared house. And such cramped conditions, like they were gonna - you know - possibly give us a place of our own. And the only benefit we got from there was that the rent was maybe twenty, thirty percent lower than private renting. So I think that helped us. I mean, it wasn't like, you know, you get the council place and you get housing paid off, because we was working, so that paid off. Which was fine, you know? We were so grateful that we still had a council place, where we didn't have to worry about - you know - maintenance, or whatever, because the council did that, because it was through housing. But we did pay rent. You know, we paid our way. I wasn't on any other benefits. Didn't get that until, because I'd miscarried, after they had the interview, they came to see what place I was, two days later I miscarried. But I couldn't lie to them, could I. But then still, but then that's when my landlord decided to throw us out. So, but they went through the courts. So that's when the housing association council did offer me a place.
 

Kevin explains how he managed financially the first six months of doing dialysis.

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Kevin explains how he managed financially the first six months of doing dialysis.

Age at interview: 42
Sex: Male
Age at diagnosis: 6
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So how did you manage, financially, then? So there was a point when you just said - you had to sort of say I can't work anymore, and -

Yeah. It didn't go very well for the first six months. I initially tried to claim - I can't even remember what benefits they were at the time, but... I effectively tried to claim sickness benefits and so on at the time, and was unsuccessful because there was a two week gap in my National Insurance contributions from leaving one job to starting another. And this kind of went round in circles, and I just had no, no income at all for six months. And then I mentioned it to my Mum, who still lives in London, who went apoplectic. Went down to the Houses Of Parliament, went to see my MP in his office and about six days later, a cheque arrived for six months back pay for my benefits. And it was all fine from thereon in. But without having somebody else to do that for me - usually, previously I'd have done that myself. You know, I'd have been banging on doors. But I just wasn't up to it at that point. So yeah, so I'm always eternally grateful that my Mum doesn't take things lying down. So after that, I then had some income at least. And I stayed living, I was living with a friend. And then I got a place of my own, for about six months. But I [laugh], my wife will now say that I moved in by stealth - she was living a couple of miles away, and we realised about, think it was - some point in our relationship, that I hadn't been home for about three months. We said well it seems I live here, then. So I got rid of my other place, and we started living together. Which made it much easier financially, because there was two incomes paying for one rent, rather than one each. So yeah, so from then on it was a little easier. But yeah, I do remember those first six months being really stressful. Because I was ill anyway, and then I think the worry about just having no income. So I was living on what savings I had from when I had been working, but they very quickly got depleted.
At key points when people became too ill to cope at work, some people decided they needed to change their role at work, retrain or even change career. Many talked about wanting flexibility when their condition got worse or they had a particularly stressful time. Richard X was initially a primary school teacher but said that it was very mentally and physically demanding so he changed his career to become more office based which was more manageable. Robin said his role changed to being based in Head Office which meant less travelling overseas. Kevin originally worked in banking and finance but decided to retrain as a teacher so that he has more flexibility. He says that now on reflection “there are some upsides to having a pause in your life a bit of a rethink. So yeah, so I'm grateful for that.”
 

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