Working lives and systemic vasculitis

This page is about:
  • Systemic vasculitis and careers
  • The point in working lives when systemic vasculitis arrives
  • What helps people with systemic vasculitis stay in work
  • A change of career direction with systemic vasculitis

Systemic vasculitis and careers

People had a variety of working backgrounds: finance, retail, oil and gas, construction, marketing, transport, project management, education, administration, housing, charities and healthcare. Nicky was among those in paid employment.

Nicky runs her own business. Her vasculitis will flare if she lets things get on top of her.

We heard that having a job gave people a routine and social contact. It took their mind off their illness, helped them provide for their families and could even be fun. Katy loves her job and needs to keep doing it “for my own sanity.” After she was diagnosed, Angharad was “terrified” that she wouldn’t be able to work because “I’ve spent my whole adult life trying to get somewhere in terms of my career.” Nicola has flexibility over where and when she works. Working while getting plasma exchange treatment in hospital helped her because “so much had been stolen from me but the one thing that I was determined was like, ‘You can’t take away the thing that I love.’”
A number of people we spoke to had kept working by making changes to what or how much they did.
Just before she became ill with vasculitis, Diane had started “a dream job,” which she had been working towards for several years. Like Claudia, she had to accept that the 40 hours a week plus travel and stress it involved was too much. She now does 20 hours a week in another role. Grant feels vasculitis has changed his “mindset” at work, in that he’ll do his bit but will also look after himself by saying no to things like heavy lifting.

The point in working lives when systemic vasculitis arrives

Vasculitis had arrived at different points in people’s working lives. For some younger people we spoke to, the effects of vasculitis meant that paid or regular employment was no longer possible. Fatigue, lack of energy, ‘brain fog,’ unpredictable symptoms and damage to the body were commonly mentioned as reasons for having to stop.

As his vasculitis symptoms are unpredictable, Dean feels working in retail is “too much” for his body.

Holly was at university when she got vasculitis. She has since tried returning to work and education.

Having to give up paid work caused financial difficulties for several people we spoke to. In addition, people who had to stop work often talked about regretting the loss of social contact, intellectual stimulation, routine and sense of purpose. Jane hopes to return to work but at the moment finds “the lack of routine is the worst thing. I’m used to getting up and going to work for eight hours and coming home. Now there’s not much structure to my day really.” However, when stopping work, it could also be a relief to reduce the stress.

After being medically retired due to vasculitis, Salma felt “very, very lonely” without work colleagues.

Jane X was a pharmacist. Although she kept working full-time for a while with vasculitis, “the cost to me was too high.” She misses “the intellectual side” but gets round it by reading.

Before they were diagnosed, people sometimes avoided taking time off sick and tried to hide the worst of their symptoms from colleagues. Isabella wondered if this might have been because she was ill but “I didn’t want to admit it to myself.” Once diagnosed, people often found ways to return after sick leave or to keep going with work, before eventually retiring earlier than they would have wanted. Mo felt it was important to return to nursing as “you have quite a lot offer when you go through something like that, when you think you’re going to lose your life.” Wendy remembers giving what she knew would be her last lecture as a university teacher. She couldn’t breathe properly and realised, “I just wasn’t well enough to be there.”

With vasculitis, Peter had five years of working reduced hours before retiring early due to the fatigue.

Some people we spoke to were already retired when they were diagnosed with vasculitis. They often commented on how hard it must be to deal with the illness and attend appointments as well as working. Richard, for example, said “I couldn’t have coped with this and continued working full-time.” In retirement, Jeremy does occasional consultancy work and Karen freelances for an estate agent. However, retirement had been the first time in Roberta’s life that she could “take it easy” and afford things like holidays and a car. Now she has vasculitis, she feels “a bit cheated.”

What helps people with systemic vasculitis stay in work

It was clear to us that people appreciated employers and colleagues who were both flexible and understanding about vasculitis and its treatment. When Pete’s hearing went, his employer let him work from home for six months before he decided to retire. When she was ill, Dawn was allowed paid time off for appointments, sick leave, and adjustments to her days and hours of work which “helped immensely.” Charlie has had “a significant amount of support” including flexible working, counselling, an adapted desk, accessibility software and regular “checking in” to see if there is anything else his organisation can do.
However, having vasculitis did raise anxieties about current and future job prospects.

Charlie needs sick leave for vasculitis treatment. It helps that his organisation is “compassionate.”

Angharad finds that having vasculitis makes job-seeking difficult, especially in a competitive market.

Steve sometimes can’t work on his PhD when his vasculitis flares, or he finds his work is of poorer quality and has to re-do it. He tries to “manage other people’s expectations” when it is then “just impossible to work to the pace that they’re used to you working at.”
Diane, Melissa and Angharad think they and other people with vasculitis will benefit if flexible working arrangements in place as a result of the COVID-19 pandemic continue. Melissa hopes organisations see the advantages of home working, “because not having to expend the energy of just getting out and about means that I can put more into my work itself.”

Working from home during the COVID-19 pandemic is going so well for Diane that her employer is thinking about making it permanent.

Not everyone we spoke to felt they had been treated fairly by their employer. Marie was on a temporary contract when she became ill, so lost her job. Sharon is annoyed that she didn’t hear from management for nearly two years during an agreed career break when – “out of the blue” – they asked her to decide by the end of the day whether she was going to return. Lynn felt that, in spite of her illness, she was doing her job as an intensive care nurse “to a much higher standard than had been given to me personally.” As a result, she is hurt that “I was sacked. I was dismissed. On capability grounds. You know, I was sacked, and my mum’ll say, ‘Oh, don’t say it like that,’ but that’s what it felt like to me.”

A change of career direction with systemic vasculitis

Lynn and Gail were among those who felt they would still be in their chosen career if their vasculitis had been diagnosed and treated earlier. However, given what had happened, they had changed direction and found new ways to use their skills and passions.

Patient and public involvement in research is very important to Lynn. Being a nurse now “seems like another life.”

Gail volunteers for a charity and has started a part-time job in social care. Mo helps out at a riding school. Wendy is editing a book. A number of the people we spoke to have volunteered with vasculitis support groups. Diane said, “I know you don’t get paid for it, but I think the job satisfaction’s a lot better.”