How to manage your chronic illness at work
More than 15 million people have long-term conditions in the UK. These long-term or chronic illnesses are conditions that do not have a cure and are managed using medication and treatment, and often limit a person’s day-to-day activities.
They include illnesses such as cystic fibrosis, diabetes, arthritis and heart disease.
Despite the large numbers of people who live with these conditions, workplaces are often poorly adapted to meet the needs of chronically ill staff.
Between 2019 and 2020, there were an estimated 32.5 million working days lost due to ‘work-related ill health.’
Molly Johnson-Jones, the CEO and co-founder of Flexa Careers, has lived with an autoimmune condition – which can cause joint swelling and itchiness – since the age of 18.
The 29-year-old previously worked in a demanding role, where she would spend long hours sitting in an office, glued to her desk. Staying in one position for such long periods of time would become extremely difficult, and Molly’s joints would end up flaring up in agony, which would make walking ‘incredibly uncomfortable.’
‘I’ve found that daily exercise is the best way of easing the joint swelling I experience and limiting the stress which can cause it,’ she tells Metro.co.uk.
‘When I was working in banking, I asked my employer at the time whether I could work from home when my symptoms were particularly bad, roughly one day a week.
‘Instead, they sent me to an occupational health therapist for an assessment, who recommended that I register as disabled to protect me from discrimination.
‘Ten days later, I was presented with a settlement package, asked to sign an NDA, and told to leave immediately. It was a crushing and shocking experience.’
Sadly, experiences like Molly’s are not uncommon.
As a result, we’ve asked those living with chronic illness to share some of the problems they face – and experts explain what employers can do to help.
How to manage chronic illness at work:
Taking time off
‘The impact of going into the office every day was that I used to have to take roughly one day a week off sick – hence why I asked to work from home on those occasions,’ Molly explains.
‘And I used to feel really guilty about having this time off. I used to think that I would fall behind on work and that my colleagues would treat me differently – which they did.’
Since leaving her old role and working for herself, Molly has been able to work from home whenever she needs to and has found she is hardly taking any time off for sick leave.
‘It just goes to show the value of flexible working,’ she says. ‘My health condition doesn’t affect my ability to work – but the environment I work in does.
‘Now we need to start creating cultures where employers take responsibility for their employees’ wellbeing and where people feel empowered to take time off whenever they need to – or, better still, before they need to.
‘Now that I’m able to work flexibly, there are only one or two times a year when my autoimmune condition is the reason I have to take time off.
‘I no longer feel guilty on those occasions. But that’s not because it happens less frequently; it’s because I know that if I don’t take that time off, I’m going to get worse.
‘I know that it’s better for me to rest and recover before my health spirals.’
Molly is not alone in her experience. Donna, who has type 1 diabetes, has previously had to postpone taking treatment for low or high blood sugars due to meetings or because work needed to be finished on a deadline.
‘When pregnant, I had to have a lot more medical appointments due to my diabetes, and this was paid,’ the 39-year-old data and excel consultant from Birmingham says.
‘However, I did get comments from management that I should be thankful they gave me the time off, and they didn’t have to allow it (although it was time off protected by law). I’ve also been told previously that I was using my diabetes as an excuse not to do something.’
Like Molly, Donna also felt guilty about taking time off or for having to take breaks to treat medical symptoms.
Legal protection
Many people with chronic health conditions will be protected under legislation, including both the Health and Safety at Work Act and Equality Act 2010, explains Steve Hall, a solicitor from the Disability Law Service.
Both acts state that employers not only have a duty of care not to discriminate and provide an environment where employees are respected, but they must also make ‘reasonable adjustments to ensure chronically ill staff are not put at a disadvantage or treated “less favourably” compared to non-disabled counterparts.’
Under the 2010 Equality Act, ‘you’re disabled if you have a physical or mental impairment that has a “substantial” and “long-term” negative effect on your ability to do normal daily activities.’
Employers should be aware of this legislation to avoid discrimination and to make sure employees receive fair treatment when they are at work and absent from work.
‘Employees should check what their contract says about sick pay entitlement,’ adds Steve. ‘If someone’s sick pay runs out, they might be eligible for benefits from the government (e.g. Universal Credit).
‘People with chronic illnesses should keep in mind that the duty to make reasonable adjustments requires employers to take positive steps to ensure that disabled people can access and progress in employment, which is ultimately good for both the individuals and the organisations they work for.’
Good management
Chronic pain can affect all aspects of our life, according to Paul Allen, AKA the Fibro Guy.
He says: ‘Work is undoubtedly one of the biggest factors which suffers – with flare-ups, dizziness, and crippling fatigue, it can be hard to keep a steady flow of work going.
‘With an estimated 25% of those diagnosed with chronic pain unable to work, it helps to have some fail safes in place to help you keep your job and independence.’
Workplaces should be designed in order to lessen the impact long-term conditions have on an individual’s productivity by ensuring the working environment is supportive and flexible, according to CIPD, the professional body for HR and people development.
They recommend having good management practices in place in order to allow managers to work with employees to develop a management plan to keep them in work and help them to ‘fulfil their potential.’
Employers should also help staff who have been off on sick leave return to work effectively in order to support them and ease them back into their role.
They should also consider which aspects of the role could exacerbate the employee’s health condition and adjust the work accordingly.
Flexible hours
Molly suggests that employers should support chronically ill staff by implementing flexible working hours.
‘I like to go on a bike ride first thing in the morning to help ease my joint pain, so it works better for me to start work a little later in the day,’ she explains.
‘No one person’s needs are the same – and that applies to both health needs and working needs.
‘So giving employees a choice over how, when and where they work is the single best thing that employers can do to support all staff members.
‘This includes staff who have chronic illnesses, as well as staff who have caring responsibilities, and staff who simply don’t suit 9-5 office shifts.’
Staff should also be given the option to work from home where possible, as this could help to manage chronic pain or fatigue.
According to CIPD, employers could also…
- Offer and encourage staff to take frequent breaks.
- Allow staff to work at a slower pace by reducing workloads.
- Share the responsibility for tasks.
Steve also adds that ‘it might be reasonable for an employer to allow a chronically ill person more time off.’
However, he suggests that chronically ill employees should discuss this with their manager or HR and might benefit from an occupational health assessment or guidance from their doctor about what adjustments could benefit them.
Open dialogue
Paul encourages chronically ill staff to inform their employers of their needs.
‘Everyone suffers differently, and the nature of chronic pain is unpredictable,’ he tells Metro.co.uk. ‘The more help you can get from your employer, the better.
‘HR departments can be very understanding if they are kept in the loop and they understand your needs. Let them know there’s no shame in chronic pain.’
Support
‘More support and understanding is needed,’ says Donna. ‘My previous colleagues and management were often unaware of my condition, and when they did find out about it, they weren’t aware of how it could affect me or my work.
‘There was often unconscious pressure to always be performing my best even when my medical issues wouldn’t allow me to do so.’
Becoming self-employed means that Donna no longer has to feel guilty for taking time off when she needs it, either for appointments or to manage her condition.
‘When my sugars are low, it is very difficult to concentrate, and I now have the freedom to step away from work when that happens,’ she said.
But turning to self-employment shouldn’t be the solution to poor treatment at work.
Boundaries
Paul recommends setting boundaries with yourself and your employers.
‘It isn’t easy trying to balance chronic pain and work,’ he says. ‘The people who tend to cope best are the ones who take action and actively get their employer involved.
‘Work with your pain and work with your employer. Together you may be able to make life and work much more enjoyable.’
While toxic productivity and hustle culture prove that, as a society, we value overworking and burnout, for those with chronic illnesses (and, let’s be honest, all of us), working at this intense level is not only tiring, it is also impossible and dangerous.
Failure to adapt
‘Many employers don’t realise that working location and working hours have no bearing on output,’ Molly explains.
‘Many also don’t realise that around 15 million people in the UK have long-term health conditions. This means that businesses stand to lose a whole lot of talent if they fail to leave behind cultures which revolve around offices and presenteeism.
‘There’s no shortage of progressive employers who are ready and able to accommodate different flexible working needs and build up talented teams who are happier, healthier and more engaged as a result.’
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