There is a significant disconnect between supportive community attitudes towards co-workers with health conditions, like multiple sclerosis (MS), and the reality of poor experiences within workplaces, a new survey has uncovered.

While the general community overwhelmingly agree (83%) that people with health conditions in the workplace are "just as capable" as anyone when it comes to working, over half (52%) of those with MS reported missing out on work opportunities due to their condition, reveals the findings of The ‘Employment and Workplace Survey’ commissioned by MS Australia, an Australian not-for-profit empowering researchers to identify ways to treat, prevent, and cure MS, advocating sustained and systemic policy change, and acting as champion for the local MS affected people.

The most common acquired chronic neurological disease affecting young adults, MS sees the body’s own immune system mistakenly attack and damage the fatty material around the nerves, leaving them exposed and unable to communicate messages properly. This means that the brain cannot talk to other parts of the body, resulting in a range of symptoms that can include a loss of motor function (e.g., walking and hand and arm function, loss of sensation, pain, vision changes and changes to thinking and memory).

Often diagnosed between the ages of 20 to 40 and, in Australia, affecting three times more women than men, MS has, as yet, no cure.

The survey also found that more than a quarter (28%) of those with MS were uncomfortable in the workplace because they felt people labelled them.

Results also show that while over eight out of ten (85%) in the general community believe workplaces are now more receptive to adapting roles to better fit employees, supportive action following disclosure is low.

One in five (17%) of those living with MS had their job description adjusted after telling their employer about their condition and one third (32%) saw physical changes made to their work environment to support them fulfilling their duties.

The survey gathered insights from 1,748 Australians aged 18 and over, including 525 people living with MS. It provides the first-ever comparison of community attitudes with actual workplace reality for those with health conditions including MS, diabetes, arthritis, cancer, asthma, anxiety. and depression.

Importantly, the findings reiterated a wide-held belief that meaningful work is a critical part of enjoying a good quality of life – with seven out of ten (70%) Australians feeling more connected to people and community because of their employment. This increased to over three quarters (77%) among those living with MS.

“Overall, this survey shows many workplaces are not keeping pace with community expectations by failing to support employees living with physical or mental health conditions,” said associate professor Desmond Graham, President of MS Australia.

“This is a real concern because MS is a progressive disease often diagnosed in the 20s and 30s and most commonly in women, at a time when establishing a career and consolidating an income are important goals. The disadvantages for Australians with MS of not being able to find and keep suitable employment across their working life are well quantified.”

In findings of concern, 3% of those living with MS, had their position terminated after disclosure to their workplace. On a positive note, three quarters (75%) of those living with MS and four out of five (80%) in the general community agreed that flexibility and working from home have introduced a more level playing field for everyone.

Disclosure of a health condition in Australian workplaces is challenging, with the research uncovering more than two out of five (41%) living with MS who chose not to disclose their condition at work saying it would "change people’s opinion" of them and one in four (25%) that it would "jeopardise career prospects".

Experts in MS and employment, associate professors Pieter Van Dijk and Andrea Kirk-Brown from the Monash Business School, Monash University say although early and effective symptom management (for MS) is helping people to stay at work longer, there are a growing number of employees who feel vulnerable and insecure in their employment.

“Fear over stigma and loss of employment remain significant concerns for employees with MS, leading to higher stress levels and perceptions of vulnerability,” Van Dijk said.

Fueling these concerns were nearly two thirds (62%) of those with MS not wanting to be viewed as likely to take more sick days and one in two (48%) thinking they won’t be seen as a ‘long-term team member to invest in and promote’.

Melbourne-based disability advocate/actor Sonia Marcon, 40, who has been living with MS since 2002, says: “Outdated misunderstandings about MS and subsequent actions by employers, can result in those with MS being too fearful to disclose their condition. In turn, remaining silent can exacerbate their condition through overwork, or injury from an inaccessible workplace."

When it comes to finding/retaining a job, nine out of ten (88%) Australians believe it is harder for those who have a physical or mental health condition to find a job. In addition, four out of five Australians (79%) believe they will also have issues retaining a job (80% of those living with MS agree).

While positive intention was demonstrated in three out of four (73%) workers living with MS who disclosed any health condition, areas for improvement were identified. For those living with MS, these included a desire for greater investment in built infrastructure (eg. ramps and accessible facilities) for 71%.

A need for better and more education and information was also apparent, with four out of five (82%) of the general community in agreement that knowing more about a person’s health condition would make it easier to work alongside them.

“This survey shows we really need to be doing a much better job empowering those living with health conditions and providing more equitable work conditions and career advancement. Putting it bluntly, employers need to go further, faster,” said Rohan Greenland, CEO, MS Australia.

“Naturally we’re concerned that those with MS and other health conditions are being disadvantaged, but also that employers are missing out on valuable talent, at a time when skilled staff are in short supply,” he added.