Travelling with an invisible illness

Travelling has become one of my greatest passions. Be it grand, long-distant adventures or local explorations, experiencing new locations and cultures is always at the top of my bucket list. However, for me solo travel is impossible; I am always accompanied by an extra passenger, my Crohn’s Disease.

I can only imagine the problems that ensue when taking trips alone without such caring companions.

Crohn’s is a form of Inflammatory Bowel Disease (IBD), it is a chronic illness that is incurable – albeit largely manageable – and causes an array of debilitating symptoms that impact the daily lives of sufferers. Having lived with the condition for eleven years, I am pretty well accustomed to my travel buddy. However, it remains that moving around the globe with Crohn’s by your side brings with it various trials and tribulations. Certainly, it is one more thing to think about alongside your passport and the location of your trusty travel pillow.

Previously, I have written on the difficulties of living with an invisible illness. The challenges posed to daily living at home translate directly to the challenges that exist when travelling; namely, that you (often) do not look visibly unwell and therefore are met with a hefty lack of understanding along the way. Luckily for me, I have always travelled with a loved one, somebody who has endeavoured to grasp how my condition affects me and so can empathise with my plummeting energy levels, groaning about stomach cramps, or constant look-outs for the next public toilet. I can only imagine the problems that ensue when taking trips alone without such caring companions.

Perhaps the greatest challenge I have felt when travelling relates to my digestive system in another way. Food. The majority of IBD sufferers will experience food intolerances, some more severe than others. Personally, I avoid many ingredients like the plague in a desperate attempt to avoid flaring-up my symptoms: dairy, gluten, garlic, onions, and tomatoes to name but a few. So that rules out your staple airport snacks such as sandwiches and pastries, and leaves you rather stumped in restaurants, particularly if you are dining in a country where English is not the commonly-spoken language.

Manageable? Yes. Convenient? No.

The result of this is being characterised as the fussy customer, the irritating girl who wants her food cooked without butter, or her burger without its bun. When I take on this character, I am desperate to exclaim ‘I have a medical reason!’ at the server as justification for my annoying order, but instead I settle for being a nuisance, somewhat disheartened at my failure to state the facts. Perhaps it is due to embarrassment, or stigma, or avoiding the somewhat painstaking explanation of your condition to a stranger, either way it is certainly more challenging when you step outside the comfort zone of home.

Another item on the checklist when travelling with an invisible illness can be medication. In my case, I take regular, long-term medication which I need to take with me on all my travels. Where individuals without this burden can jet off seamlessly for infinite periods of time, my needs differ. A doctor’s appointment, blood test, and prescription charge (or two) later, I am set to go. But not before ensuring the correct labelling of my tablets and the presence of an updated prescription in my suitcase. Some countries may even require personalised doctor’s notes. Manageable? Yes. Convenient? No.

practical matters (such as food and medication) are facile in comparison to the psychological challenges faced

An inevitable outcome of my condition is becoming closely acquainted to toilets. A topic that is often considered taboo or impolite becomes an integral part of life for IBD sufferers. With gastrointestinal tracts as unpredictable as the lottery, we are constantly aware of the proximity of the nearest toilet facilities when on our travels. Whilst it is often possible to light-heartedly approach this element of IBD with a touch of toilet humour – if you will – it can also be a cause of stigmatisation, embarrassment, and discomfort; particularly when in unfamiliar surroundings.

Whilst diarrhoea and stomach upset is not uncommon amongst travellers, this can often be salvaged by an Imodium tablet and good rest. Whereas, for those with IBD, this can be detrimental for the entire trip as it brings the risk of triggering a flare-up. Moreover, with significantly more fragile guts, we are more susceptible to contracting gastrointestinal issues when travelling. For me, this has made flights, long bus-journeys, and excursions a source of anxiety and results in my being constantly aware of the volatility of my digestive system when planning trips.

In short, fulfilling my desire to travel is impeded, but not made impossible by my illness. Avid travellers will know the stress that planning trips often brings, so it is unsurprising that the addition of a chronic illness to the packing list brings significant challenges of its own. Challenging though it is, travel is certainly accessible for sufferers of IBD as well as other invisible illnesses; with preparation, planning, and plenty of courage there is little to stop you living out your bucket list. That being said, practical matters (such as food and medication) are facile in comparison to the psychological challenges faced. To relieve the fears and anxieties of travellers with invisible illnesses requires a cooperative effort; not only must sufferers themselves be determined with a confident hold over their condition, but non-sufferers, travel companions, and other individuals encountered en route must attempt to ground empathetic considerations in the knowledge that not every disability is visible.