Lupus Overview

Lupus is a long-term condition characterised by extreme tiredness, joint pain and skin rashes. Lupus is not fully understood, but it is an autoimmune condition, meaning the body’s immune system doesn’t work properly and attacks healthy cells. It is estimated that 50,000 people in the UK have lupus.

What are the signs and symptoms of Lupus?

Lupus is characterised by extreme tiredness, joint pain and a rash, but can cause other symptoms too, such as :

  • Headaches
  • High temperature
  • Mouth ulcers
  • Hair loss
  • Increased sensitivity to sunlight
  • Brain fog

Severe lupus may involve inflammation and consequent damage to vital organs such as the heart, lungs and kidneys.

How is Lupus diagnosed and treated?

Lupus is difficult to diagnose because there is no conclusive test and symptoms are similar to those of other conditions. For example, joint pain could be symptomatic of arthritis and not Lupus. Blood tests may help rule out anaemia and liver and kidney issues which may share symptoms with Lupus.

A blood test will also identify high levels of certain antibodies which could point to lupus.

A doctor will typically prescribe a combination of lifestyle changes and pain relief/anti-inflammatory medication, although there is no one-size-fits-all approach and symptoms may fluctuate over a lifetime.

Lifestyle changes that may help someone living with lupus manage the condition include:

  • Using high-factor sunscreen to protect skin from ultraviolet rays
  • Staying active, even when experiencing a flare-up in fatigue
  • Eating a balanced diet, including vitamin D and calcium
  • Stopping smoking

People with lupus typically experience flare-ups – temporary worsening of symptoms – before they go into remission for a while, to then return.

Treatment for lupus could involve cognitive behavioural therapy (CBT) to deal with the psychological impact of the illness, such as the isolation resulting from spending increased time indoors out of the sunlight, or resting due to flare-ups in joint pains and fatigue.

There are a few ways to confirm what sort of reasonable adjustments should be made for an employee with Lupus:

An employee may not disclose their Lupus upfront, but if they do, questions regarding the nature of an employee’s Lupus and what extra support they may need can be broached sensitively. For example:

  • Have they required adjustments in the past? For example, avoiding certain types of energetic tasks which might exacerbate their joint pain.
  • Encouraging the employee to express their strengths and interests and which tasks they might enjoy doing is a positive way of adapting to their needs and empowering them, in spite of their lupus.
  • Even if the employee does not wish to disclose their lupus – or they have not even received a precise diagnosis – an employer can focus on making reasonable adjustments, rather than seeking to determine the precise disability their employee has.

What reasonable adjustments are possible for employees with Lupus?

Employers have a legal duty to make reasonable adjustments for employees with Lupus if they know, are aware of, or could reasonably be expected to know that the employee has Lupus. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance upfront, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of Lupus:

  • Flexible working hours to accommodate medical appointments and periods of increased absence or decreased productivity following a flare-up in symptoms.
  • Additional breaks if the person’s medication causes their concentration to lapse or makes them drowsy shortly following taking it, or if they are experiencing brain fog.
  • Adjustments to duties depending on the severity of their symptoms, which may be variable and improve or deteriorate from one week to the next. This may also be dependent on when they take their medication if they are required to operate machinery, for example.
  • Raising awareness so that colleagues understand the employee’s Lupus and can help ensure the employee feels comfortable at work, for example, when taking additional breaks.
  • Sensory adjustment in the working environment to help with light sensitivity – an employee with lupus may need to sit away from direct sunlight, or have blinds installed over a close-by window.

Lupus Signposting

Lupus UK  – UK-wide charity which provides information to people approaching diagnoses of lupus, as well as people already diagnosed. The charity gives awareness talks and fundraises for research into the condition (01708 731251).

Lupus Trust – charity set up to fund research into lupus while collaborating with a range of medical professionals to support people living with the condition. Their online community and resources provide support for people with lupus too.

Other Research Resources

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