The hidden challenges of invisible disabilities

Millions of people work with disabilities they rarely talk about, but greater awareness can help both employers and employees, writes Jessica Holland.

Fighting to make it as an actor can be tough.

“It’s a cut-throat profession,” says Isabella McGough. “You need to look physically strong, and show that you’ve got the strength of mind, body and soul.”

The 23-year-old Londoner is up for the challenge, though, juggling rehearsals with a job at a pub to pay the bills and teaching work on the side. “I’ve always tried to live my life to the fullest and not miss out on anything,” she says.

This is why she hesitates to tell people that she has epilepsy. It’s not the type that’s sensitive to flashing lights, but she’s at risk of seizures if she overexerts herself or doesn’t get enough sleep.

“I’m fortunate,” she says. “I’ve never had a seizure at work, but there are times when I’ve had to call in sick because I have to stay in bed and sleep.”

She doesn’t feel she can always be upfront about the reasons why she might need to take a break. “There have been times when I’ve said I had flu symptoms because, as an employee, I don’t feel that [needing to rest] is a good enough excuse to have a sick day. That’s when you feel almost guilty for it.”

It’s a dilemma that will be familiar to hundreds of millions of people worldwide who have physical or mental health conditions that affect their day-to-day life, but which are not apparent to the outside world.

A billion people worldwide live with some kind of disability, according to the World Health Organization, and one US survey found that 74% of those with disabilities don’t use a wheelchair or anything else that might visually signal their impairment to the outside world.

If someone uses a wheelchair, or is visually impaired, it can be easier to understand the difficulties they might face and to support them. For those with so-called invisible impairments, such as depression, chronic pain or myalgic encephalomyelitis (ME, or chronic fatigue syndrome), it’s often a different story. Colleagues may not spot the challenges they are experiencing, and may find it hard to comprehend or believe someone with a “hidden” impairment genuinely needs help.

A silent challenge

There are also internal barriers to be surmounted. A 2011 Canadian survey found that 88% of people with invisible disabilities had a negative view of disclosing their disability. “People worry about being labelled,” says Guy Chaudoir, a service manager for the disability charity Scope. “One of the hardest things is putting pressure on yourself to achieve, and being afraid to ask for help, to say ‘I can’t do this today.’”

Jimmy Isaacs has direct experience of the negative impact that disclosing an invisible illness can have. He was diagnosed as HIV positive four years ago, while he was working for a sunglasses company in the UK, and says that as a consequence of sharing that information, he was pushed into accepting a cut to his hours, pay and responsibilities. Unable to pay rent on reduced wages, he quit, and says that recruiters disappeared as soon as he explained why he’d spent time between jobs.

Stigmatisation and discrimination of HIV-positive people persists, and it can affect work life. HIV/Aids organisations estimate that, globally, people with HIV have unemployment rates three times higher than national rates.

Isaacs has HIV-positive friends working in finance who feel unable to share their diagnosis with employers. Despite his own ordeal, Isaacs encourages those with invisible illnesses to disclose their condition early, where possible.

“First, if you need to take time off later, you’re covered,” he says. “And, if [employers] react badly, you can educate them. Then, bit by bit, we can all move forward as a society.”

Isaacs now works as a store manager at a company called Rolling Luggage, who he describes as having been “fantastic” about his illness. They even gave him time off to go on a speaking tour with the campaign group Youth Stop AIDS.

Loaded term

HIV and epilepsy are two conditions that can have varying levels of impact on a person’s day-to-day working life, but they both automatically qualify as disabilities in many countries. In the UK, for example, they are covered by the 2010 Equality Act, which ensures various protections, and requires employers to make “reasonable adjustments” in order to remove barriers to work.

This might mean changing work hours so the employee can avoid rush hour, or allowing leave for appointments. Those who don’t legally qualify as disabled are still entitled to statutory sick pay in the UK, and to ask for flexible working hours.

Even for those who legally qualify as disabled, the word is a loaded one. Many feel that the term does not really apply to them, especially if their condition is not visible to outsiders.

“I really struggle to know whether to tick that box,” says Emmeline May, who works as an administrator for a local authority in London. She is affected by several chronic conditions – anxiety, depression, Post-Traumatic Stress Disorder and benign hypermobility syndrome, which causes joint and muscle pain. They can all be managed with the right support, but can also flare up unexpectedly.

“I worked somewhere quite corporate for a few months and it nearly broke me,” she says. Rather than being supported at work, she felt as though she had to prove her ailments were real. When applying for her new job, she was “very open” about her conditions, and the company gave her a specialised keyboard and chair along with extra time off for therapy. She has now been in the same job for nine years.

Her employers “are very understanding when I say I need to go home today or work different hours this week,” explains May. “But I work very hard, I’ve been there a long time and I’ve built up a lot of trust.”

Tapping the talent pool

Smart employers should take note, according to Scope’s Guy Chaudoir. Disabled people are four times as likely to be unemployed as others in the UK, with modified working hours being among the most commonly stated needs, while transport is one of the biggest problems. Inclusivity can allow employers to tap this pool of talented candidates and helping people do their jobs better can inspire loyalty.

“There’s definitely a movement towards flexibility, whether it’s because of childcare, disability or work-life balance,” says Chaudoir. But he warns there is still a lot of work to be done in raising awareness, especially in competitive fields. “It’s society’s barriers that are disabling people.”

Danny Clarke is the operations director for the ELAS Group, which provides training to companies in occupational health and employment law. He says companies should try to develop a culture where staff feel safe confiding in their employer. He recommends they have a mental health and well-being policy in place so that employees know how to access support. “The best piece of advice we can offer [to those with invisible illnesses] is not to suffer in silence,” he says.

Isabella McGough says she doesn’t want “special privileges” as she pursues her acting dreams, but a more widespread understanding of invisible illnesses might help.

“You want to feel that bit of care,” she says. “You’re not a number. You’re someone who works hard, but you need to balance your life as well.”

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