Long Covid highlights plight of illnesses that wax and wane

When Jack Gaskin developed the stress-related condition psoriatic arthritis following the collapse of his business and a relationship break-up, he had hoped that employers would be understanding of his needs.

At times, the condition is disabling; at others, he can live not too differently to how he did before his diagnosis. He has discovered, however — as millions of workers have before him — that such “relapsing-remitting” conditions can be particularly challenging, not just for those living with them, but also for their bosses.

Describing his condition and its impact, the 39-year-old from Wallington in Surrey, explains that he initially developed psoriasis, the skin condition where “your immune system is confused and it attacks itself”. After about eight months, however, an already testing illness evolved into psoriatic arthritis. “Your immune system is still confused, but it starts attacking your joints,” he says. Gaskin highlights the support he has received in coping with this from the charity Arthritis Action.

As he concentrated on adapting to his new limitations, which included pain, fatigue and “brain fog”, Gaskin took a relatively undemanding job at a coffee shop. But his employer and colleagues struggled with the notion that, while he was able to work normally some of the time, at others, his disease was disabling.

“I had to change my role, I think, four or five times because I just couldn’t have managed it physically,” he recalls. When managers saw him in pain “they’d let me sit down for a little bit longer”. However, the condition changes daily, “so it’s never a constant”. This lack of a pattern was difficult for his employer to adjust to, he acknowledges and, after reducing his hours over the course of a year from 35 a week to 15, he decided to leave.

Now, Gaskin has co-founded a new business, Tea Joy, which sells bubble tea. He is sales director, a role that allows him to adjust his working life to his physical capabilities. “The good thing now is . . . I’m not on my feet as much,” he says — adding that, if he feels unwell during the day, he can always catch up with his work on his own schedule in the evening.

Employers have long been used to dealing with fixed disabilities — for example, accommodating wheelchair users — but the challenge of conditions that wax and wane has only come more clearly into focus since the advent of long Covid.

An estimated 2.1mn people living at home in the UK are afflicted with it. Despite recovering from the virus, they continue to suffer symptoms for months, even years, afterwards.

Underlining its significance, the Chartered Institute for Personnel and Development has issued material to help employers manage staff with long Covid. Ben Willmott, the CIPD’s head of public policy, says it is “certainly something that employers are having to really think about”. But many of “the principles around managing [and] supporting long Covid are similar to how you manage and support people with a range of other health conditions”, he notes.

It is important, says Willmott, to have a culture where people “feel they can be open and honest” with managers and can highlight issues at an early stage, so they can be allowed some flexibility, preventing the problem from getting worse and requiring a long absence. A return-to-work interview can allow for discussions about flexibility and deal with “issues that might be a bit of a faultline in terms of their role or the things that might trigger them”, Willmott adds.

Many businesses are still falling short, however. Anastasia Berry, policy manager at the MS Society, a research and campaign group for people with multiple sclerosis, suggests the government should help employers and employees “understand how people with MS and other relapsing conditions can be supported at work”.

That should include information on the condition, recommended policies to help employers, and information on the legal duty to provide reasonable adjustments, Berry says. “There is not enough pressure on employers to ensure they support people living with MS to stay in work if they want to,” she argues.

Shriti Pattani, president of the Society of Occupational Medicine, believes too many employers do not understand the specific contribution that can be made by an occupational health specialist, who will focus not on a staff member’s constraints, but on what they are still able to do.

I would say you’re lucky to have that employee, who will probably be the most positive person in the room

Employed by an NHS trust, Pattani has helped keep clinical staff with long Covid in the workforce by redeploying them to less physically demanding “virtual care” (governance) roles. Occupational health specialists, says Pattani, aim to “take away the idea that you need to be 100 per cent well to do your work. You don’t need to be 100 per cent; you need to be well enough.”

For employers that keep faith with staff who have relapsing-remitting conditions, the rewards are enormous, says Gaskin, who argues such conditions breed resilience. “I would say you’re lucky to have that employee, [who] will probably be the most positive person in the room. Day-to-day things won’t bother them, because they have a bigger understanding of what a real problem feels like.”

They will also “work really, really hard to be seen as normal . . . and have a really positive impact”, he adds, “All that person needs is just a little bit more empathy and a little bit more compassion”.