What it's like to work with an unseen disability

I take immunosuppressants.

Taking immunosuppressants literally gives me life. It also means I’m prone to catching infections and viruses much more easily, and that it takes me much, much longer to get better.

Right now, I’ve got that really nasty coughing bug that’s been going round.?

It’s horrible, isn’t it? If you’ve had it, you’ll know that as well as a hacking cough, symptoms include a headache, muscle aches, fatigue…?

Most people who have this bug will be relieved in a few days. For me? It’s been going on for a few weeks now.?

Why am I bothering to tell you this??

There is simply no way that I could incorporate the amount of rest I need right now into a regular salaried role. In addition to exploring my passions creatively and without restriction, my health is one of the biggest reasons I went freelance.

It was an article in Personnel Today that prompted me to draft something, despite being dosed up with painkillers and on self-imposed bed rest. A report from INvolve - The Inclusion People , an inclusion consultancy, found that two thirds of employees with invisible disabilities are left to fend for themselves, and receive no support from their employer.

Further findings showed that a third of employees didn’t disclose their disability to their employer for fear of discrimination, and that many had experienced loneliness and poor relationships with colleagues and their manager as a result of their disability.

I’m sorry to say that none of this is shocking to me.

I’ve spent nearly twenty years as a disabled employee trying to climb the career ladder, and while my perspective might be skewed today because I feel so rotten, I’m so tired and so angry that this is still the status quo.

My whole working life has been blighted by a lack of understanding - sometimes a willful lack of understanding - about how to accommodate my needs as an employee with an invisible disability.

For years, I elected to disclose my condition because, on balance, it seemed to offer me greater protection.* Sometimes this tactic worked - such as when a former employer attempted to use my worsening health and subsequent sickness absence to give me a written warning, which was eventually overturned. I would later end up in intensive care, hospitalised for two months. Not sure that counts as a win, but I guess it proved I wasn’t a malingerer.

More often than not, however, having an invisible disability has counted against me.

At the very beginning of my career, and after having recently recovered from major surgery, I made the mistake of telling a recruiter over email about my health record. I was ghosted. This blatant discriminatory tactic didn’t deter me, and I re-sent my CV, omitting anything that explained my brief period of unemployment. I was immediately sent to interview for a job, and started the following week.

I was discouraged from applying for an internal job at an ‘equal opportunities’ organisation with a dedicated programme to support the progression of disabled employees because “your health might be a barrier.” While well-intended, these kinds of microaggressions serve only to uphold the ableist structures that prevent people like me from getting on at work. (And no, I didn’t apply for the job.)

Even when I was at school, a teacher once remarked to my parents that I didn’t look sick, when they explained I’d missed a lesson due to having to attend a hospital appointment. She didn’t believe me when I’d accounted for my absence and decided to check that my story tallied.

Not being believed is a deeply traumatic experience, and led to me, aged just 14, being diagnosed at a very late stage indeed. So to have to suffer this in adulthood - to have to prove not only your worth as a worker, but also to have to prove your disability is exhausting and demeaning.

Part of the problem is that HR and matters of employment law are so frequently outsourced to inexperienced managers who may have only a cursory understanding of their company’s disability policy, if such a thing exists, nevermind the Equality Act.

While I’d always recommend any disabled employee have a conversation with their manager and HR about the reasonable adjustments they will require upon joining a company, if the reasonable adjustments involve sickness absence - watch your back. I have countless examples of disclosing that I need more time to recover from illness than the average employee, and yet it’s almost always come back to bite me either in the form of active discrimination, or being passed over for promotion, or just being out of favour with the bosses.

What is almost never talked about is what disabled employees do to enrich an organisation.

Aside from working twice as hard when we are feeling well, disabled employees bring fresh and unique perspectives that open up new opportunities and new markets. Gen Z are becoming much more vocal about their expectations of equality and diversity at work, and companies won’t be able to get away with failing disabled employees as they have for years.

I’m glad that there is at least greater recognition of those like me, with invisible long term health conditions in the workplace. But even in Big Bad 2023, it should not be the case that to achieve true work life balance, we should need to become self employed. That carries its own risks, particularly when you have a condition that means your state of wellness fluctuates.?

It hasn’t all been awful, and I have been extremely touched when managers have been kind and shown themselves to be genuine allies. A manager at the Treasury who went to great lengths to ensure I was put onto a mentoring programme, given a salary uplift, and who showed genuine kindness and compassion when I was ill. My first PR boss who was light years ahead of the curve when it came to outputs over presenteeism.

Covid exposed an anachronistic working culture that served very few of us. We’re all living and working for much longer, many of us with unseen health conditions and disabilities. The #futureofwork has to have diversity, equity, and inclusion at its core, and expert voices like mine must be front and centre of the discussion rather than on the periphery.

Maybe if the infrastructure had been in place to support me I wouldn’t have felt so ashamed and beaten myself up for not being normal. Maybe I’d have realised sooner that I have so much to offer because of my disability.

Thirteen years of austerity and the demonisation of disabled people has undoubtedly informed the current discourse - and I don’t feel optimistic about what the opposition has to offer disabled people when it is hell bent on hounding benefit claimants.

As the CEO of INvolve - The Inclusion People Suki Sandhu OBE said, “disability, mental health challenges or neurodiversity need not be a barrier to succeeding at work if the right support is in place.”

Let’s hope we can make this a reality.

Now if you’ll excuse me, I’m going back to bed.

*I was a trade union rep many years ago, so I knew the law inside out. Still do - it’s force of habit when you have a condition like mine.