"But you don't look sick!" - The acceptance of invisible disabilities in the workplace

“Really? You can’t just control yourself enough to not eat for another hour?!” is what a diabetic colleague was once told when she was eating a banana (most discretely) during a meeting.

Most companies will be perfectly happy making adjustments for staff with visible disabilities. Partly because they genuinely believe that a disability shouldn't stand in the way of hiring top quality people and potentially partly because they are obliged to do so by law. And rightly so! As an example, there is no reason why someone with a hearing impairment couldn't be a great software developer or someone in a wheelchair a top executive.

For people working with those who have a visible disability it is generally fairly clear what they have to do to ensure their colleagues can be as productive as everybody else. After all, everyone would find it perfectly understandable that a company ensures appropriate access for staff in a wheelchair, and provides equally appropriate adjustments for e.g. colleagues with a visual or hearing impairment.

But what if someone has what we call ‘an invisible’ disability? Then it all gets a little more complicated…..

A disability is described as ‘an on-going physical challenge’ and while we may not think of it, this also includes things like cystic fibrosis, diabetes and for instance, epilepsy. While you would never be able from looking at someone with the before mentioned conditions that they are experiencing this ‘on-going physical challenge’, they often are.

Five years ago, quite out of the blue during a rather stressful situation, I had what was later diagnosed as my first epileptic fit. At the time I thought it was just stress but after thorough diagnosis I was informed I have partial complex epilepsy. It didn't mean anything to me at the time, as, like most people I have talked to about this since my diagnosis, I always thought that you were born with epilepsy rather than getting it later in life and that those suffering from seizures fall to the ground and shake uncontrollably. Growing up I had a class mate with epilepsy and well, I found her seizures frightening. To be diagnosed with the same disease was bit of a shock for me. Eventually though, it completely changed the way I view all invisible disabilities.

My epileptic episodes are what they call ‘silent seizures’. I can be talking to you while I’m having one and you wouldn’t notice. I will continue our conversation in a normal way and maybe need a bit more time to find my words but that’s about it. I don’t lose consciousness, don’t fall to the ground and there’s definitely no shaking. I am however incapable of remembering the information that is conveyed during the minute or so that I’m having my episode. Normally this isn’t much of an issue because it will rarely happen that an entire conversation boils down to one minute but I still always make sure to write everything down and have found that very useful many times.

Once acceptance of my newly discovered ‘condition’ (I still struggle to see epilepsy as a disability and can’t imagine I ever will) started to kick in, I felt it would probably be a good idea to inform some people at work. To say that didn’t entirely go the way I’d planned would be an understatement. The first person I told responded by telling me her neighbour’s cat was having seizures too and the next person asked me if I was now officially being classified as ‘retarded’ (no joking!). I quickly learned that being epileptic was not something I should share with people. With the exception of some who really tried to, people simply did not understand and it was so much easier to just keep it to myself.

As a result though I would sit through crazy amounts of seizures (I can have around ten on a bad day) without anybody noticing because I was determined to just keep going. The fatigue and lack of focus were things I tried to cope with. Sometimes it worked, sometimes it didn’t.

When I moved companies, I decided I was going to change things and be more open about my epilepsy. Given I still haven’t been able to find medication that keeps my seizures under control, I need to take some pre-cautions. When there’s a lot of flashing lights at a party, I may choose not to go. When someone is scrolling through an excel sheet quickly I will ask them to please slow down and when I have a seizure in an important conversation I now just tell them what is going on and ask them to pause so that I can pull myself together.

I am extremely fortunate to be working for a truly amazing company that supports me in every way possible. However, from talking to others with the same condition and people with other invisible disabilities, like for instance asthma or diabetes, I have found that not everybody is in that same fortunate position. Many people with invisible disabilities are afraid to tell their employer out of fear of being fired or seen as difficult and when they do talk about it, find they are being excluded, overlooked for promotion or treated differently by colleagues.

I truly believe that when employers don’t educate themselves and their staff on invisible disabilities they will struggle to potentially retain many highly talented employees suffering from various unnoticed conditions. Not only is this costly for the company, it is also unnecessary as sometimes a small adjustment can make a huge difference.

Starting to raise awareness about invisible disabilities in your company requires some effort but isn't difficult. Basically every company over 100 people is bound to have a couple of employees with an invisible disability and you can start by encouraging those employees to feel comfortable enough to talk about their challenges. In order to do that, you really have to be willing to listen, to be open to making some changes and to include and value diversity in your workplace. One of the things that I have seen work really well is to find a ‘champion’ comfortable enough to talk about their condition. From there usually more people will open up which will result in a snowball effect. Next step is to then make the necessary changes. For instance, don’t use stroboscopic lights during a party when you have people with epilepsy in the company (though not all epileptics will be prone to light sensitivity) and be mindful of the colleague who has asthma when organising a physical event.

How has this been done for me here in my current role? Apart from some amazing HR support, here’s a simple example of how I was made to feel accepted. The other day when, not for the first time, I forgot something fairly important (the epilepsy is affecting my memory quite significantly) one of my colleagues said “no worries, we all forget things and you are still twice as bright as the average person”. Now whether that is true or not, it sure made me feel so much better about myself and that’s just what I needed at that moment.