- Nearly 40% of people with multiple sclerosis fear disclosing it would hurt their careers.
- PinkNews CEO Benjamin Cohen talks to Insider about the challenges of running a company with the condition.
- There aren’t many role models in business with long-term disabilities or illnesses, he said.
- See more stories on Insider’s business page.
When Benjamin Cohen, the founder and CEO of PinkNews, a UK-based online news company, last tested the waters of seeking venture capital (VC) funding, he decided not to mention he has multiple sclerosis (MS).
“I always figured that right at the end it’d come out; they’d do due diligence,” says Cohen, 38, who has so far decided not to take on VC investment.
Still, he occasionally kicks the tires on raising funding and recently disclosed his condition to a VC.
“She said: ‘I didn’t know, but it wouldn’t have made any difference,'” he recalls. “It’s easy to say that now.”
Cohen isn’t alone. As MS Awareness Week begins today in the UK [April 19], the MS Society, a UK charity supporting those with the disability, published new research finding nearly six in 10 people with MS have kept it a secret from their colleagues. Almost 40% worry sharing the information would impact their career.
More than 110,000 people in the UK have MS — that’s 190 per 100,000 people. It’s a disease that affects the way the brain and the central nervous system interact with each other, often manifesting itself in the inability to move easily or excessive tiredness.
Cohen, who has had MS since he got glandular fever just before his bar mitzvah in 1995, has long been wary of disclosing his condition. He said he imagined future investors or business partners might be concerned that the sole founder of the business has a long-term disability that could get worse, rendering him unable to do his job.
“I try to explain to people, ‘Yes, but I know about that and try and prepare for it,’ whereas someone else could be the CEO and just get knocked down by a bus, and there’s no plan’,” Cohen said.
Statistically, there are many more people like Cohen heading up businesses, or working in offices across the country, who are living with the issues it causes. Yet few speak up about it.
“There just aren’t that many role models in business with long term disabilities or illnesses,” Cohen said.
However, not talking about it – hiding away the illness, for fear that it’ll affect how employers and co-workers see you – is causing more damage in the long-term, according to Cohen. It makes having MS appear unusual, and can lead to condescending behaviour.
“When people say, ‘Oh, I didn’t realise you do so much,’ it’s kind of implying that people who have a disability shouldn’t be able to achieve so much,” says Cohen.
“While they think they’re praising you, they’re actually kind of insulting a whole tranche of individuals.”
Cohen said other people with MS don’t always feel encouraged to bring their true selves to work
Cohen set up two businesses by his early twenties and was writing about tech businesses for The Times of London and appearing on TV screens as a correspondent for Channel 4 News.
Yet he found it difficult at the time to negotiate how to manage his illness while appearing on-air. At times, while presenting packages, he couldn’t control his hands. Viewers wrote in to complain his hand movements were distracting from his stories.
Wanting relief from the bright lights required to shoot television, and unable to see properly because of MS, he asked to wear an eye patch on air, but bosses refused.
“They felt me wearing that would create additional questions for the viewer, rather than the story I was talking about,” Cohen said.
He believes that wouldn’t be the case now. Cohen left Channel 4 News in 2012, the same year that the channel broadcast the London Paralympic Games, which significantly changed attitudes towards disability and representation in the UK. ITN, the production company that produces Channel 4 News, declined to comment.
While attitudes to disability have changed, Cohen has still found it difficult to talk openly about the challenges MS brings.
After more than a decade of little to no serious symptoms, Cohen recently suffered a relapse. He began feeling strange while driving, then went onto a company-wide
call and couldn’t speak properly.
PinkNews’s chief operating officer later sent Cohen an infamous clip of reality TV star Kerry Katona slurring her words during an interview with ITV’s daytime show “This Morning,” pointing out that Cohen was acting in a similar way.
“It was quite a challenging situation because I couldn’t communicate properly,” said Cohen. “The speech improved in about a week, but I couldn’t speak properly and I couldn’t type properly. I was finding using the phone really hard.”
Despite this, he kept working. “I didn’t get the chance to recover in the way I would have liked,” he said. The only full day he took off while suffering from bad symptoms was in mid-February – the day after he had his first coronavirus vaccine, which triggered a flu-like response.
A common side effect to the vaccine others would recognize gave Cohen the excuse to slow down. “That felt quite legitimate to say: ‘No, I needed to be in bed,'” he said.
Cohen has only recently began talking more openly about having MS. Until then, he simply didn’t say unless the situation absolutely required it.
“I didn’t want people not to have the confidence to join” PinkNews, he said.
Likewise, until recently he didn’t deem it necessary to tell business partners such as Snapchat and Twitter.
“We’re relatively small compared to our partners – I didn’t want another tick in the negative box,” Cohen said.
More recently he recognized the importance of being open about living with the condition and the need to lead by example.
“Empowering people to be themselves is so important as an employer,” according to Cohen. “You want them to be themselves. If there’s something different about them – whether it’s a learning disability or mental health issue or a physical disability, or they’re going through a stressful time – we want to be there to empower themselves and bring their true selves to work.”
Having spoken to other people with MS, he knows it isn’t always that easy in many workplaces.
“It’s something in general employers need to deal with. It’s not just about dealing with discrimination. It’s about empowering people to be there,” Cohen added.
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