Hidden disabilities at work: 'Every day I'm fatigued and in pain'

People with invisible disabilities face a daily dilemma of whether to conceal or reveal their conditions to colleagues.

 

“I’m constantly anxious that my ‘luck’ will run out. Either in being able to work at all, or that my workplace will run out of patience and I’ll be out of a job,” says Rebecca Allen, a data analyst in London.

 

Allen, 30, has hypermobility syndrome – a connective tissue disease causing lax joints and muscle fibres – as well as fibromyalgia, and gut and lung problems.

 

There’s a total lack of understanding at work about what a hidden disability is

 

Every day at work, she’s fatigued and in pain – even a tough commute can mean she’s unable to make it through the working day. But because her disability is hidden – that is, a disability that isn’t immediately apparent – she doesn’t necessarily appear disabled to her employers and colleagues. It means she’s had colleagues in previous workplaces make pointed glances at the clock when she’s had to come in later because of her health, as well as derogatory comments about her commitment to the job.

 

“I’ve found there’s a total lack of understanding in the workplace, as in the wider world, of what a hidden disability is, whether it’s real or not, whether it could exist at all,” she says. “To most people, a disability still means being in a wheelchair.”

 

Over half of disabled people feel at risk of losing their jobs and one in two have experienced bullying or harassment at work because of their disabilities, according to new research by disability charity Scope. But for disabled people with hidden disabilities – such as chronic pain conditions or mental health problems – the workplace can mean having to battleunique barriers, from being judged as workshy, because bosses and colleagues don’t believe they’re disabled, to the dilemma of whether to disclose their disability at all.

 

Jenny Hilton*, a senior public relations manager who has bipolar disorder and depression, says having a hidden disability means feeling like “your job is in jeopardy all the time”.

 

Hilton, 40, has always kept her mental health problems a secret at work but after a flare up meant she needed several months off, she disclosed her depression to her employer last year. Her fear of their reaction was so great that when her boss subsequently asked her to attend an occupational health assessment, she resigned.

 

“One line in the letter I received said that a possible outcome could be dismissal,” she says. “I resigned the day before the assessment. I was terrified of being fired.”

 

Analysis by Scope shows that as well as the UK’s large “disability employment gap” – fewer than five out of 10 disabled people have a job compared with eight in 10 non-disabled people – disabled people who are in work are more than twice as likely to fall out of work than non-disabled people.

 

Hilton says the climate of job insecurity for disabled people has always had a psychological impact on her – she feels she has to work harder and longer than others to prove herself. It became worse a decade ago after her experience as a managing director in a small company: she was suspended without pay for asking for reduced hours (she’d been getting four hours sleep a night) and after resigning, found out her ex-partner had told the chief executive that she had bipolar.

 

“It was the fact that they found out I had bipolar [rather than that I’d asked for reduced hours] that made them go down the ‘disciplinary’ route,” she says. “There’s still so much stigma attached to [it].”

 

She’s now working out the five-month notice of her current job and plans to retrain as a graphic designer and work from home, although it will mean a large salary cut. “I’ve managed to work my way into very senior positions but now feel like I’ve been ‘found out’,” she adds. “Like I’m an unworthy employee.”

 

Emma Satyamurti, partner in employment and discrimination at law firm Leigh Day, says it’s very common for people with hidden disabilities not to trust their employer to respond favourably if they disclose their condition. But similarly, this “fear factor” also works the other way: an employer may want to help but doesn’t know what to say or do.

 

An employer may want to help but doesn’t know what to say or do

 

Though deafness is often noticeable to others, Sally Taylor*, who has profound hearing loss and works for local government music services, experiences this confusion daily. Despite having a hearing dog with her, colleagues don’t understand the support she needs with communication in their open plan office. “I often refer to deafness as an invisible disability,” Taylor says. “People don’t understand I need good lighting, no background noise, and them facing me so I can lip-read.”

 

For Satyamurti, it’s cultural change that’s most needed to address this: both in relation to the work environment generally and specifically, disabled staff. “Employers can work to create a healthy and productive workplace for employees. That would be good for everyone, not ‘special treatment’ [for disabled people],” she says. “Clear processes are also needed. A safe space for employees to raise any issues or to say what reasonable adjustments they may need.”

 

In addition, there needs to be a willingness from employers to bring in specialist advice, while at the same time listening to the employee. “The disabled person themselves will be an expert,” she adds.

 

With the government’s consultation on work, health and disability closing on 17 February, this is a key time to press for progress in the attitudes and actions of employers when it comes to hidden disabilities. Raising awareness that hidden disabilities even exist is vital. Satyamurti says another crucial move is a greater acceptance of flexible working patterns for employees who need it. “It’s not someone doing less work,” she explains. “It’s someone being trusted to manage their condition around their work.”

 

This mix of common sense and consideration from employers is perhaps the fundamental shift needed to help disabled employees feel more secure and supported at work. Since being in a more “understanding” workplace, Allen feels more able to talk about her disability at work. But she still fears that because she needs adaptations, such as flexible hours, her career is going to stall.

 

“If there’s a glass ceiling for women there’s a much thicker one for people with hidden disabilities,” she says.

 

*some names have been changed

 

By:

Source:theguardian.com