In January this year, when the world was struggling to cope with a new wave of COVID-19, my invisible disability became visible out of the blue. I found myself in A&E among the hundreds of COVID-19 patients who were fighting for their lives. The following months spent in a hospital bed and at home recovering made me appreciate how dedicated and caring our doctors and nurses are.

I have suffered from Crohn’s Disease for more than 30 years, which is 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 manageable when times are good but, when it flares up, acute pain and sheer fatigue take over. 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, life was a struggle. It all started in the summer between my third and fourth year and 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 three years to diagnose. I could 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 because, if I wasn’t at home, I could often be found with my head on the desk coping with acute cramps. 

The same pattern continued at work for the first five years when I joined the Foreign Office. I was desperate to ‘be normal’ and to be treated ‘as normal’. I didn’t share that I was struggling to work, sleep or eat, or 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 if I needed one. Once, I overheard a couple presume that I was “blind drunk, or worse” when I was folded up in two, in agony with stomach pain. Sometimes I’d end up way beyond my stop, having fallen asleep on the 20-minute train ride from Waterloo. The final 400m walk from the 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. 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 running companions.

So why am I saying this? I don’t want a 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 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. While we are addressing physical disability, and gender, race, religious and 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. We can’t 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 avoid the exhaustion of playing catch-up. Instead, it was a zero-sum game because I was either present or absent. Modern technology and the lessons learnt from COVID-19 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 while self-isolating at home. 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. Let’s make life easier and unlock everyone’s true potential.

Thank you Olivier for sharing your story with us. Keep an eye out on social media as Olivier will be joining us as one of our speakers for next terms continued Speaker Series events!