Health Learning to Balance Dreams and the Reality of an Invisible Disability
“Is there any condition that may prevent you from completing this expedition?”
“Well,” I said, my voice hushed. “I have Crohn’s Disease”.
Crohn’s is an autoimmune disease, largely affecting the digestive system but featuring a plethora of other problems – think psoriasis, blepharitis, malnutrition, and constant, agonising pain. Not much is known about Crohn’s, meaning that most medical professionals even today still can’t put their finger on what causes it or how they could possibly begin to treat it. What they do know is that it is lifelong and incurable, and is destined to create an abundance of barriers in someone’s life. Still, I’m considered one of the lucky ones – I only need a high dose of Prednisolone, Omeprazole and Mesalazine to keep my whole system from collapsing in on itself. I try not to look at the side effects on the bottles.
From a young age I have dreamt of travelling the world, of visiting ruins and long-forgotten lands. Meanwhile, from a young age I have also suffered with my disease, creating hurdles at every possible step. Secondary school? Had to be homeschooled at the end due to poor attendance. School trips? Had to be cancelled and non-refunded. A sudden urge to join the territorial army? Had to leave due to a flare up of my gastrointestinal tract. Every possible thing I have wanted or could ever want has had my illness breathing down its back, and for a little while I thought this meant I would be unable to explore the globe. Thankfully, I was wrong.
I crave new destinations, hidden crevices in the planet to adventure to. I have a deep love for good food, new cultures, and a constant thirst for stories. When I first got diagnosed with Crohn’s Disease, I thought I was going to have to live vicariously through travel magazines and Karl Pilkington TV shows, sanctioned to spend eternity drugged in my bed. However, when the medication-fuelled haze of pessimism cleared, I was able to complete my qualifications and set off to uni – and from there, the world.
I’m not saying it’s been easy. I have spent many a trip grasping the walls of a toilet stall, with a new hostel friend worriedly asking if I’m okay from the other side as I bite back the pain. I have tried to travel like a normal person, underestimating the persistence of my disease and consuming something which has left me bed-bound for days. After these experiences, I have learnt the unpredictable nature of an invisible disability in the harshest way possible, something which I was never really able to face at the time of my diagnosis.
Most people tend to have a strong mental response to their diagnosis, as the disease manages to manifest itself both physically and psychologically. It affects people differently, and at the time of diagnosis most UK patients will find themselves offered free therapy at the hands of the NHS, which is pointless for most by the time they finally reach the top of the waiting list. For me personally, I struggled a lot at the beginning with isolation and had a very strong negative response to my diagnosis, and by the time I could finally visit someone (a mere eight months later), I had already worked through the stages of depression and disassociation myself. By the time I finally saw a professional, I was already seeing the end of my first treatment.
From there, a healthy stage of remission followed. This meant that I was medication free (although against the advice of my gastroenterologist, who wanted to follow my previous heavy treatment with an even heavier course of action), and able to live a university life where I could drink, eat pizza, and spend nights partying and days sleeping. It was fun while it lasted, but it sure did end with a bang.
Back on medication to stabilise the deep inflammation that had been building inside me throughout my first semester, I can now partake in simple pleasures such as eating chocolate again. I have to do a lot of maintenance outside of the drugs in order to stay on a healthy course, but it keeps me alive.
People think that I’m not disabled because they can’t immediately “see” it. When I leave a disabled public toilet after a fit of agony and blood I get glares and mutters, and God forbid I park in a disabled space as my intestines verge rupture. It’s made even more difficult that most people don’t understand – the amount of times I’ve had someone shout something negative at me from the other side of a single toilet stall is truly disheartening. But at the same time, I have been forced to talk about living with Crohn’s, and in turn, have met encouragement and other sufferers of similar illnesses. Whilst I have often found misunderstanding and confusion, I have also found support amongst strangers, which has only fuelled my passion to keep travelling and educating.
The dream is still to travel the world, although at a more careful pace than those who are more able-bodied than me. I have come to terms with the fact that I will have to cancel a lot of experiences and opportunities, but I have decided that I can live with that minor inconvenience. Whilst I would still love to be an adored explorer spending half my time knee-deep in the Amazon or eating in a hut with some long-forgotten tribe, I’ve found that I also love the idea of educating others on the less visible disabilities, and if at all possible, help inspire those who are both ill and well to follow their own dreams. If my own body is constantly fighting to shut itself down and I can still travel, what’s your excuse?