North East Lupus Group: lupus and work

Working with lupus

Lupus affects everyone differently, and symptoms can change from day to day. That makes it hard to keep up a steady level of work. Lupus UK has produced two guides for people who are able to stay in work, and both booklets can be downloaded from the charity's website.

For the person with lupus

The first booklet is for anyone who wants help to stay in work or to return to it. It also covers the support a person may be entitled to after a recent diagnosis, and the options of retraining or moving to a different kind of job inside an organisation. Those are worth thinking through if physical limits make the current role hard.

One reader wrote of starting a new job after leaving university with a first-class degree, and four years later running a business from home, helped by partner, friends, family and extra support from the university.

For employers

The second booklet is for the employer of someone with lupus. It describes the disease, how it can affect people at work, the difficulties it can cause and how they may be overcome, with up-to-date pointers to advice on disability law, best practice and adjustments for employees.

A member's advice about the invisible nature of lupus: being honest with a line manager helped both her and her organisation, and if you do not ask you do not get, so ask for help. Colleagues and managers may surprise you.