Understanding Invisible Disability

by Olivier Evans

Understanding Invisible Disability: Why the lessons learned from Covid could help with disability and diversity at school and at work. 

Many people judge a book by its cover.  Yet many people suffer from visible or invisible disabilities or deal with other hidden obstacles in their lives.  Onlookers, friends, employers and teachers don’t know there’s an issue, let alone know how to deal with it successfully. 

Olivier (OP 1983-1994) explains his story.  He encourages people with invisible disabilities to speak up from an early age, and believes our experiences of working through Covid - at school and in the workplace - can offer some solutions to help make people’s lives better. 

In January this year, when the world was struggling to cope with a new wave of Covid, my invisible disability became - out of the blue - painfully visible.  I found myself in A+E amongst the hundreds of Covid patients fighting for their lives. 

During the following months in a hospital bed, and at home recovering, it made me appreciate how dedicated and caring our doctors and nurses are.  And it made me reflect upon how our society is becoming more open, looking at ways to fight discrimination and improve diversity at the work place and in our communities, encouraging people to speak up and be honest about who they are, and how they are feeling.  

Covid and ways of working

Like many of us, I spent 2020 learning - at home and at work - how to adapt to a new Covid reality.  Coping with my children taking part in online lessons, watching my wife - a languages teacher at Kingston Grammar School - adapt her lesson plans to teach through a screen and learn to cope with IT problems.  And on my part, starting remotely a new job, running a large team without being able to meet my colleagues in person, to get to know them properly, to build trust, to explain my vision, to get the best out of the team by being physically together.   

Despite all the teething problems - which IT platform to use, bandwidth issues, insufficient space at home for everyone to work, coordinating work meetings with lesson times and lunchtime - we all found a way of working.   It wasn’t perfect.   We missed not seeing school friends and colleagues. We missed the efficiency sometimes of face-to-face meetings to make progress on an issue. We dreaded the silence of colleagues or pupils during online meetings and discussions.   And yet, we could also see the advantages of sometimes being able to study and work from home.  

Coming out of Covid, many employees don’t want a return to the old normal, but would prefer to find a new balance with hybrid working.  This is what we are seeing happening in many companies today.  Universities are also offering lectures online rather than in person. The trick will be for our society to find the right balance, and not to allow ourselves to slip back into our old ways. 

If done properly, this could have the positive side effect of helping people with all types of disability - physical and invisible - as well as others dealing with the daily obstacles that life confronts us with as parents, children, teachers and employees. 

My story 

I have suffered from Crohn’s Disease for over thirty years - a shade over two-thirds of my life. In reality, it’s hard to remember life before.   It’s a condition that can affect any part of the intestinal tract.  Thousands of people in the UK are in the same boat, with the same or similar illnesses like Colitis or Irritable Bowel Syndrome.  Life can be perfectly manageable when times are good.  But when it flares up, acute pain and sheer fatigue take over; and you can need the loo 30-40 times a day, whether you’re at home, commuting, at work or at school.   Sometimes it can be controlled through medication; but - as in my case - extensive surgery is often required. 

For the first 10 years of my condition during my education, life was a struggle. It all started in the summer between my third and fourth year.  I was about to start my GCSE courses.  I wanted to carry on playing my favourite sports at PGS, not least hockey, cross-country and tennis.  The illness was not well-known at the time, so it took nearly 3 years to diagnose.  I would only attend school and university half of the time, missing a lot through illness or surgery.  I would miss chunks of exams and come back to the exam room feeling exhausted, drained and unable to focus properly. Teachers would find it difficult to know how best to handle it as - if I wasn’t at home - I could often be found with my head on the desk coping with acute cramps.   Others would joke, in a way that would simply not be done these days, and ban me from sitting next to the wall as my pale and diminutive stature would mean I blended in with the white Dulux walls.   In my Upper Sixth, one university even told me I had to come out of hospital and attend an interview in person if I wanted to be considered for a place.  

The same pattern continued at work for the first 5 years when I joined the Foreign Office.  I was desperate to “be normal”, and to be treated “as normal”.  I played down my illness. I didn’t share with colleagues or bosses that I was struggling to work, or having to adapt my lifestyle, when I slept and ate, to be able to get to work, or travel abroad for work.  I didn’t explain to my bosses, Ministers or international colleagues that I might desperately need to leave a meeting, a parliamentary debate or a negotiation.  I felt ashamed. 

During my commute, I would never ask for a seat on the train or tube if I needed one.  Once, I overheard one couple presume that I was “blind drunk, or worse” in my suit when I was folded up in two, in agony with stomach pain. As my illness was invisible, I couldn’t blame them, but rather blamed myself for not being brave enough to tell them why I needed a seat.  Sometimes I’d end up way beyond my stop having fallen asleep on the 20-minute train ride from Waterloo.  And the final 400m walk from the train station would feel like doing an ultramarathon in the desert heat.   Once home, I would usually collapse exhausted on the sofa.  

Fortunately for me, these last 15 years - at least until this January - have been much better.  After having extensive surgery in 2003 and 2005, that left me with very little intestine and an ileostomy, few people would know - at first sight - there was anything wrong. Yes, I still have to deal with the obstacles around my operation, and the side effects of Crohn’s, like regular migraines, arthritis and brittle bones.  Yes, I still often feel “different” when people at work or at social events innocently challenge me as to why I don’t drink alcohol - something that they probably wouldn’t do if I appeared to abstain from alcohol on religious grounds.  And yes, I still stress about the loo taboo: knowing where the closest toilet is when I am out and about, or about using someone’s bathroom when I am at their house. And I stress when I go through airport security and try to ensure I have an aisle seat on a plane.  

But that’s the very nature of this illness and disability: it’s invisible until something goes wrong.  And when things are fine, I want to be treated the same as anyone else, and test my own personal limits at work or in my hobbies.  I want to get a job on my own merits.  I want to go on holiday or go to the swimming pool like anyone else.  I want to qualify for - and compete in - marathon races alongside my (faster) brother and fellow running companions. 

So Why Am I Saying This? 

I don’t want the 30-year younger version of me in a school like PGS to do the same as I did.  I suffered in silence for many years, wanting to fit in and conform.  But we live in a more open society now, where we can speak up more about our individual needs.  Schools, universities and employers are more aware of the need to manage and celebrate diversity.  We have a social and moral obligation to ensure that everyone is able to fulfil their potential and have a fair chance to contribute to society.   That is progress. 

The debate around disability is moving on.  Whilst we are addressing physical disability, and gender, race, religious, LGBTQ+ discrimination, we need to ensure that invisible disabilities like mental health, dyslexia and chronic medical conditions are also taken into account.  But to achieve this, we must have the confidence to speak up, as we cannot be supported if others don’t realise we need help. 

I think back to all those days when I was younger, when being able to attend a class, lecture or work meeting remotely, without the struggles of the commute, would have allowed me to stay up to speed with my work, and avoided the exhaustion of playing catch up.  Instead it was a zero sum game: I was either present or absent.  Modern technology and the lessons learnt from Covid can change that.

This doesn’t necessarily mean that it is going to be easy or smooth running.  It may cause more work.  That is confirmed as I watch my wife adapt her lessons to integrate every child be they learning in the classroom or whilst self-isolating at home.  And we will no doubt need rules and guidelines to ensure that such flexibility isn’t abused.  But that’s not a reason to duck the issue. 

So if you are suffering from a visible or invisible disability, or other personal obstacles, I would urge you to speak up.  Don’t be afraid to explain your needs. And let’s use the lessons learned from Covid and the modern digital technology available to us to make life easier and unlock everyone’s true potential.