by Hannah Millington
In the UK, 1 in 5 people have a disability and 80% of these people have an invisible disability – this means there is a high chance someone (or multiple people) you work with will have a hidden impairment.
What should not be hidden, however, is the individual needs they may have to help them get through the working day. It feels as though society is still archaic in many ways and – all these years later – tends to only believe, or validate, something that can be seen. We have come a long way, but the root of the problem remains the same.
Lots of workplaces do set out to ensure everyone is treated fairly and don’t tolerate discrimination – but unfortunately, this is not true everywhere. People don’t always feel comfortable telling their friends and family about their hidden struggles, let alone their employer.
So, a work environment that doesn’t actively make people feel safe and secure, can result in employees not speaking out at all. While it is not a legal requirement for an employee or candidate to talk about a disability, doing so is often the first step to receiving any help needed.
Even if people do disclose their invisible disability, many don’t feel it is then accommodated and face unfair treatment. Taking into consideration the recent rise in remote working, how can we ensure the varying needs of individuals with invisible disabilities are accommodated in all workplaces?
It is first important to understand what an invisible disability is. According to the Equality Act 2010, a person has a disability if they have a physical or mental impairment and the impairment has a substantial and long-term effect on their ability to carry out normal day-to-day activities. ‘Long-term’ in this context means lasting, or likely to last, more than 12 months.
An invisible disability is a disability that can’t always be seen and isn’t immediately noticeable or obvious – there is no official list as they vary and qualify under the above definition. But, generally speaking, they tend to include: mental illnesses, a physical condition such as Crohn’s disease or ulcerative colitis, autism, epilepsy, learning disabilities, sensory loss such as hearing or visual impairments, chronic pain, fatigue or illness and more.
It is then important to understand the legal system. While it is crucial for everyone with a disability to know their employment rights, it may be even harder for those with an invisible disability to make it known they’re suffering. So, knowing how you should be treated and what you are entitled to is a useful tool.
It is against the law to discriminate against anyone for their disability at work and disabled people have the right to be protected against any such discrimination under the Equality Act. It is the employer’s responsibility to act accordingly if they are aware one of their staff members has a disability – it is their duty to implement what is known as ‘reasonable adjustments’. A failure to do so can be also be classed as discrimination.
Reasonable adjustments help to meet the individual needs of staff, or potential staff, with an impairment. For example, changing a physical feature in an office that may put someone at a disadvantage (e.g. replacing an office chair with a specialist one to help with an employee’s back condition), allowing flexibility (e.g. flexible working hours or quiet break out areas for those with a mental health condition) or giving extra support to job applicants (e.g. providing audio or braille to someone who is blind).
If you are discriminated against at work for your disability there may be action you can take. If talking to your employer hasn’t worked, you can seek help from Acas, Citizens Advice, a trade union representative or, in regards to legal aid, Civil Legal Advice.
Speaking personally, I am able to empathise to a certain extent about what it’s like to be the only person in the room to know there is something ‘wrong’ with you. This has come from mental health and, most memorably in relation to the workplace, from when I developed a ‘repetitive strain injury’ in both my hands.
It happened during a temporary office job and, because I’d also had bouts of other health problems and felt embarrassment and pressure to return to work after this, I then pretty much suffered in silence when this new problem came about.
I didn’t know how to articulate what I was feeling and the longer I pushed through the pain alone, the more suppressed stress I had, and the worse my pain got. I even switched to using my left hand instead, only to learn that history really does repeat itself.
When I forced myself to half-heartedly ask for a wrist-support or alluded to pain, it didn’t really get picked up – I looked fine after all. Soon I had no choice but to stop working there. I tried other lines of work with less computer involvement (all the while disclosing nothing to them) but the pain just spread to other parts of my body and became unbearable, so I had to stop this too.
It was later deemed as chronic and incurable, after being given a number of different diagnoses, prescriptions and failed treatment options. I spent the best part of a year (as a young adult) without proper use of both my hands and, on the most part, being unable to work. This of course only leads to an increased deterioration in mental health, then physical health, and so the circle continues.
For me personally, I could later see a connection between the mind and body in regards to the run up to, and trigger of, my injury. Luckily, I found my own way to improve and manage my pain.
Prior to this, however, I had faced scepticism from doctors and felt mis-understood by some friends and family. This included confusion when no immediate answer was found, being made to feel as though I was exaggerating what I was feeling, and a lack of empathy for the extent I was suffering. Unfortunately, it seems logical this transpires to the workplace too for many people. Though it is this ‘logic’ (i.e. a lack of understanding), that needs to be amended because it contributes to the ill-health of the individual.
While others may have also had triggers for their conditions, I’m aware this isn’t the case for everyone and, of course, many invisible disabilities are innate.
Hidden Disabilities Sunflower Scheme
In terms of helping to show who has a hidden impairment, it seems the simplest way is with the Hidden Disabilities Sunflower Scheme. Staff can wear a Sunflower item, such as a lanyard or badge, to subtly show to employers and colleagues they may require extra support.
Paul White, CEO of the Hidden Disabilities Sunflower Scheme, said: “The Sunflower, in essence, is making the invisible, visible.”
He said it is each individual business’ decision as to whether they support the Sunflower Scheme and choose to recognise their staff or customers who have a hidden disability.
Most importantly, he said: “Businesses who support the scheme are working hard to ensure staff are trained to recognise the Sunflower and its meaning to the wearer – they are taking positive steps to ensure that a person whose disability is hidden is recognised and supported.”
Though the Sunflower can still be worn on online video calls, positive steps are being taken to further adapt to remote working, including being able to use specific Sunflower borders. Sunflowers are also currently being worn to show who is exempt from wearing face masks.
IBD, Crohn’s and Ulcerative Colitis
Invisible disabilities are largely misunderstood, and some tend to get discriminated against more than others, such as the two types of inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis. I spoke to Crohn’s & Colitis UK about this.
Sarah Hollobone, Campaigns Manager & Miram Jones, Campaigns Project Coordinator, said: “The most common symptom of Crohn’s and Colitis is frequent, urgent diarrhoea. Imagine this, everyday, when you’re out in public, at work, just going about your daily life.
“Crohn’s and Colitis are invisible and because of this, over 50% of people with the conditions have faced verbal or physical discrimination – just for trying to use the accessible toilets they urgently need. This has to change.”
Additionally, their March 2019 survey found 93% of people who challenge healthy-looking people using accessible toilets think they are ‘standing-up’ for the rights of disabled people or that it’s ‘not fair’ to others.
Their ‘Not Every Disability is Visible’ campaign has led to more than 3,000 venues installing accessible toilet signs and staff being trained about the conditions. However, they want the signage in all major UK venues.
“We want to ensure that people with Crohn’s or Colitis aren’t hidden at home – they’re out and about, living life to the fullest – working, exercising, socialising – just like everyone else. Free from discrimination and abuse,” they said.
The advice they have for those who are apprehensive about disclosing their invisible disability to their employer is: “Firstly, you’re not alone. We know it takes guts to talk about living with Crohn’s and Colitis and any chronic invisible condition.
“And if you’re really struggling to find the words you could suggest your employer or work colleagues download our In My Shoe app.“
This immersive app simulates (for 24 hours) living with Crohn’s or Colitis and the impact it has on everyday life.
On working to improve things in the current climate, they said: “Now so many of us are adjusting to working from home, there is a great opportunity for all of us to re-evaluate how accessible our ways of working are.
“Lockdown measures have shown that many companies are able to work flexibly in ways that can accommodate the reasonable adjustments that people with invisible disabilities might need.”
Their July 2020 ‘Life in Lockdown’ survey showed that 42% of people with Crohn’s and Colitis think the pandemic could change the way we work for the better, yet 56% said the current working situation has had a negative effect on their mental health.
“In summary, what we see is people’s experiences of the pandemic and its impact on their working life is different and we encourage employers to decide on each employee’s individual needs in a supportive and open conversation,” they said.
Working From Home and Invisible Disabilities
I also spoke to Scope, a national disability charity, for a more general perspective. James Taylor, executive director of strategy, impact and social change, also talked positively of remote working, while helping to highlight more specifically the problems that led to ‘WFH’ not being positive for all.
He said: “Working from home can make a big difference for people with conditions such as chronic fatigue, who may need to rest throughout the day.
“However, we know some disabled people have struggled to get the equipment they need to work safely from home, or have felt excluded because of issues like inaccessible video-conferencing software.
“Employers need to make sure their disabled employees have the equipment and support they need to work from home. Increased isolation and anxiety has also had a detrimental impact on many people’s mental health, so it’s important that employers are recognising that and offering support.”
He also points out: “Having a visible impairment doesn’t mean others have a better awareness or understanding of your needs.” While it may be easier for these impairments to be seen, it seems that the solution needed overall is to ensure everyone’s ‘individual needs’ are seen.
I also spoke to four individuals with invisible disabilities to further explore how needs vary at work depending on the person – the common theme throughout, however, was that all of them became self-employed after facing disability related challenges in the workplace.
Jenna Farmer, who has Crohn’s disease, used to be a teacher but is now a freelance writer. She said: “I found it quite difficult to be a teacher. There is no flexibility around your job. You can’t just leave a lesson in the middle to go to the toilet, or work a half day or from home if you’re not feeling well.”
Speaking on her change in career, she said: “Self-employment has been a massive difference. Although I don’t work any less hours – in fact I probably work more. It does mean I can have complete flexibility about my day and not feel guilty if I need to take some time off to rest.”
And, in regards to personal suggestions for areas of improvement, she said: “I think there needs to be better systems in place for people to communicate the complexity of their conditions so HR can make the right adaptations rather than just assuming.”
Autism as an Invisible Disability
He said: “Being in senior sales and marketing roles, I was often expected to attend award ceremonies or host customer events. The next day I would be physically and mentally exhausted, but just assumed everyone felt that way. It could take me a few days to recover.”
In regards to his disability being hidden, he said: “It’s incredibly difficult, because although you are struggling every single day, it may not impact those around you and therefore, no-one else is aware. That’s the problem with hidden disabilities. If you have a broken leg or arm, it is visible. People can see it. This doesn’t happen with autism.”
Speaking on common misconceptions, he said: “Autism is a spectrum condition and affects people in different ways. I like to say – when you have met one autistic person, you have met one autistic person. Just like anybody, autistic or not, each and every person is different.”
On whether he decided to disclose his autism to any of his employers, he said: “In my own experience, in the business world, mental health in general amongst men, can be seen as a weakness. And honestly, I was worried this would be the same with autism.
“But I decided it was important for me to share my diagnosis and so I built up the courage to tell my boss.” The response? “When I told him, his first words were ‘Really?!, you don’t look autistic!’ That really took me aback, because it had taken a lot for me to actually pick up the phone and talk to him.”
People’s reactions seem astounding when repeated in this way, but they happen all the time – I’ll never forget when I finally plucked up the courage to go to the doctors after a year of panic attacks and I was told ‘it can’t be that bad, you’ve got ready, you look nice and presentable’. The outcome of that appointment wasn’t a relief that I was getting help, but a note-to-self to look more ‘rugged’ next time.
Kelly continued: “Later in the conversation I tried to explain some of my traits, as I now understood them, and he responded with ‘Ha! I just thought you had a stick up your arse!’ I decided it was time to make a change. I realised I had been masking all these years, to try and fit in, and I just didn’t want to continue.”
And following with the theme, this change was to become self-employed. “As with most people who run their own business, it comes with a sense of freedom. Being in charge of my own destiny,” he said.
His suggestions for the future are: “The starting point is to dramatically increase the awareness, understanding and acceptance of Autism and other hidden disabilities within the workplace.
“Having open and non-discriminatory conversations about the challenges people face in today’s workplaces and what strategies can be adopted to help minimise them. These strategies will benefit not only those who have hidden disabilities but also those who don’t. Creating a happier and ultimately more productive environment.”
Chronic Fatigue Syndrome (ME)
As chronic fatigue syndrome (CFS)/(ME) seems to be another invisible disability that receives a lot of discrimination, but particularly in the form of scepticism and disbelief, I also spoke to two women about their experiences of having the condition at work.
J.S.Kemp, who additionally has Postural Tachycardia Syndrome (PoTS), said: “While being diagnosed I continued to try to work full time. This became increasingly impossible as new symptoms presented leaving me unable to function for weeks at a time. For me, in addition to extreme fatigue, my symptoms included swollen lymph nodes, most notably in my throat, this triggers throat infections and a loss of voice.
“My hands and feet would swell making it painful to walk and stand. I also have extreme bouts of what sufferers call ‘brain fog’. The sheer amount of time I needed to take off meant I had to use my allotted holiday days and eventually saw my employer cut my wage to make up for the additional hours I had to take.
“However, the main problem with M.E/ CFS is that if you manage to take the medication you need to function and pull yourself together enough to get into work, (as most of us have to), your colleagues constantly question how ‘ill’ you really are, ‘You don’t look ill’ becomes a constant refrain.
“Even if your employer believes you and accommodates you at the onset of the illness you frequently have to reconfirm the issues the disability causes you and how this affects you and your work. After a while I stopped wearing make-up so that they could see how tired I was.
“My work place only began to implement recommendations after I sought support from multiple agencies, health practitioners and received legal advice on how my employer should be supporting me. It would have helped immensely had I been able to work from home far earlier than eventually occurred due to coronavirus.”
As of August, she has been able to maintain a full-time job once again, but only after being made redundant and then pursuing freelance work.
She added: “It would be a lot easier if there was more support in general as the pressure to continue to work through illness or return to work prior to being properly rested and recovered is, in the first place, often key to the onset of many hidden conditions.”
The second woman with CFS who shared her story with me wanted to remain anonymous. She believes her workplace was, ultimately, the cause of her health issues. As the difficulties she faced got worse, her symptoms did too – for example: “…that was another trigger, I started to suffer from anxiety and migraines, and I even found a new lump in my right breast. A scan showed it to be benign and stress-induced, and it eventually disappeared with rest.”
She went through a particularly challenging time and it should be noted she experienced both disability and racial discrimination at work (also illegal). There are far more complexities to her story, but the key points are: “When I worked in marketing, I had to fight to keep my health issues hidden from colleagues. In the industry showing ‘weaknesses’ isn’t the done thing as it’s known to be very pressured at the best of times, and doing the job with a chronic illness makes life extraordinarily tough.
“So, I suffer with a whole range of symptoms, which together, makes me feel I’ve got horrible flu/Covid-like symptoms, and a bad hangover all at once. Plus, my legs sometimes give way without warning. I would hang on to walls, desks and railings if I felt my legs going, and use all of my willpower to not collapse in a heap. Brain fog made it tricky to focus in meetings and calls. I’d rush to the ladies’ if I had a wave of nausea due to the intense fatigue.
“I eventually lost my job due to my health issues, and self-employment is my only option now. Ironically, the ME was previously triggered by bad burnout brought on by working for an irresponsible and bullying boss for another agency.”
The most poignant piece of advice she gave was: “Don’t push through it – if you can afford not to work, take time out to rest and recuperate. No job on this planet is worth putting yourself through the pain I endured. Your wellbeing is your priority; without your health you have no career.”
She also suggests finding out which benefits you’re eligible for if you’re thinking of reducing your hours, resigning, or worried about losing your job.
Scientists are now researching whether long covid is also an autoimmune disease (such as CFS/ME). As there are similarities between the two, considering long covid as something needing similar support, would be important when trying to prevent disability discrimination.
The FT reported in January of this year that there has been a rise in employment tribunal cases for disability discrimination after a rise in mental health claims and since the government abolished hearing fees in 2017.
The fees were ruled unlawful by the Supreme Court and, after a three-year drop in cases, they returned to figures previously seen before being introduced in 2013.
One tribunal decision published in March 2020, from an employment disability discrimination case ‘Miss S J Austin v The Leeds Teaching Hospitals NHS trust’, particularly shows how employers can face hefty consequences for discriminating against disabled staff members.
Austin, a woman with fibromyalgia, depression and generalised anxiety disorder, had long been an employee of the NHS herself and as a result had access to medical files. She was also a patient due to her health conditions. It was eventually found that her medical conditions, in particular her anxiety and fibromyalgia, were the reason behind her checking her own medical records repeatedly (including her mother’s three times).
But when it first became apparent she was doing this, the NHS informed her they were launching an investigation for gross misconduct into her, which increased her anxiety. Due to the delay in the investigation her anxiety heightened even further and so she enquired about it to her line manager – to which she was suspended on the basis of pestering. Her employment was eventually terminated and, after failing to find work elsewhere, she contacted Excello Law.
The Tribunal found that her behaviour was not blameworthy as it was caused by her disability, and so should not have been the reason for her dismissal and suspension. It was also found Austin did not understand it was not permitted for her to access her own medical records. The Trust had failed to take her medical conditions into consideration and accommodate them.
It was decided that Austin had been unfairly dismissed and subjected to disability discrimination. In damages, she was awarded £265,719.23 as compensation for disability discrimination and £3,394.68 for breach of contract in respect of notice.
On reflection, if I had known how much it was the employer’s responsibility to accommodate my needs, I might have felt more compelled to ask for help, had less shame about it and found some work that worked for me. And, while self-employment has clearly been a helpful solution for those with invisible disabilities, it shouldn’t be the only solution.
From all of the above, it is increasingly evident that our eyes are being opened to the fact that ‘work life’ is not our only life and both elements can, and should, co-exist together in harmony. We have a rich supply of tools to make individual needs visible to the workplace, we just need to believe in them, advocate for them, improve them, offer them and use them.
Further helpful resources:
- Hidden Disabilities Sunflower: See their website for more information on joining the scheme, training staff and getting a Sunflower
- Crohn’s and Colitis UK: See their employment factsheet (relevant to the coronavirus environment), employer guide you can share with your line manager or HR department, Talking Toolkit you can use to help start conversations about conditions, or this explainer video to understand more about the conditions
- Scope: Visit Scope’s online community for advice and support from their employment advisers, as well as other disabled people who may have been through similar situatio