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”.
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.
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.
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.
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.
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.
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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