Travelling with chronic fatigue syndrome is absolutely possible

My travels have reminded me that I don’t have to give everything up, just because I’m sick.

by Kathryn Stone

Last week I took a night bus for the first time since I got sick. I have always hated night bus journeys but, being cheap, they’re a necessary evil. I realised last week, however, that such journeys are just too costly right now—in energy terms. Four hours into the journey, I started to feel the tiredness and pain that only someone who has suffered chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) or a similar disease can understand—and that exhaustion doesn’t go away for several days.

Lying awake, feeling sorry for myself, I started thinking about what I was doing: solo travelling with CFS/ME.

It sounds bonkers, given how ill I was last year. I needed people around to look after me and cook for me most days, because I was too tired—sometimes I was even too tired to leave my bed and go to the toilet. This all changed last October when I spent a month travelling in Malaysia. I was way too sick to go, but a friend booked the flights, and I somehow dragged myself out there. After recovering from the flights, however, I found my symptoms were dramatically reduced—and for that month, I could do things in the day and still go out at night!

Perhaps naively, I assumed the warm weather and beaches were my cure and back home, in the cold—inspired by my unexpectedly improved health—I made a snap decision to spend six months in the sun and sea, and totally kick CFS/ME. But CFS isn’t like that and, unsurprisingly, my magical cure didn’t work! I’m still sick, but instead of being at home with friends and family, I am travelling solo on the other side of the world. It does sound bonkers!

But I still don’t feel crazy for doing it. At least, not most of the time! My travels have reminded me that I don’t have to give everything up, just because I’m sick.

My attitude has completely changed: instead of dwelling on what I can’t do, and becoming depressed and anxious, I now look at things differently. This means actively enjoying every moment of being able to travel; and facing, embracing, and learning from each new challenge.

Perhaps the greatest challenge for any solo traveler—sick or otherwise—is creating and maintaining new relationships. When travelling, particularly as a young person, there is an expectation you will be on the go all the time; trekking, in bars, or maybe doing casual work. Consequently, these are easy places to meet people. However, with CFS/ME, these are things I absolutely cannot do—but missing out on these opportunities makes it hard to form friendships.

In normal life, relationships take time to develop, but travellers tend to bond more quickly, over a shared experience or a drink. For this reason, I realised to meet new people without over-exerting myself, I needed to create that chance moment on my own terms. For me, this means travelling with a slackline and a flute. Publicly slinging my slackline between two trees feels a lot like performing a mating dance rather than looking for friends, but in Malaysia, I began slacklining on the beach, and quickly made such good new friends that I ended up living in their house for the next month! Other people have approached me while I was playing my flute on the street. I started giving impromptu flute lessons—and being taught how to beatbox! Such things are doable on good health days, and have enabled me to meet likeminded people and share new skills—without over-exerting myself.

Having made friends, however, the next challenge appeared. Suddenly, I was included in all their plans: waking up for sunrise, cycling to the beach, surfing, and then heading to endless parties at night. And although I really wanted to join in, I couldn’t manage it. So I lay in bed, consumed with a mixture of anger at my body and an intense fear of missing out (FOMO). My response was to take strong painkillers, drink too much coffee and too much alcohol. That way I could stop feeling my body and could carry on like everyone else.

But in the end, ignoring my body caught up with me and made me sicker.

So, now, I am conscious to not over-exert myself. I have tried to come to terms with the fact I will miss out on things—just as I have to at home. But healthy people miss out too: there is always more to do in each place than the amount of time you have to spend there. You just have to realise you can’t do everything—and sometimes that sucks. Some days feel harder than others, but instead of focusing on what I’m missing, I now try to focus on the good experiences I have enjoyed. My answer to FOMO is not to fight it, but to deal with it. It’s okay to feel bad sometimes, but I do not let it overwhelm me—I’m still lying on a beach with a fresh coconut in my hand, after all!

For me, FOMO is not just missing out on experiences, but also losing chances to deepen friendships. Therefore, at some point I have to drop the line and explain that I am ill. Telling people you have CFS/ME is never easy; most people only have a vague idea what it is, and sometimes it feels almost like coming out. But CFS/ME is a fundamental part of who I am, and I want people to know that part of me. I want people to respect my needs and understand me, instead of judging me when I can’t join in. As with any invisible illness, superficially, you appear healthy… and then, suddenly, you need to rest. It’s easy for people to doubt your validity—and the fear of appearing whiney makes it difficult to know when or how to tell people. Often, I leave it until I am very sick—and then wish I had said something before.

But travelling is so much about meeting new people and I constantly have to ‘come out’. While this is tiring, it has taught me a lot about communicating honestly and openly. I have often felt a certain shame attached to my illness; but the more people I talk to about it, the more I am working through that shame, and learning to accept my sickness. Travelling also allows me to surround myself with supportive people—and even with other people living with chronic illness. I have met several other sufferers of chronic illnesses lucky enough not to be bed-bound. They, too, often see travelling as a way of avoiding some of the exclusions of everyday life for those with a disability. When travelling the cost of living can be very cheap, without the standard stress of working a job, so you can support yourself on very little.

All these people, and the need to be honest and take charge of my own health and mindset, have really helped me—not only to understand the physicality of ME/CFS, but also to communicate this understanding to others!

This is a vital lesson to take home to normal life, where communication is perhaps even more important, and relationships are generally less transient.

What it comes down to in the end is that I am sick and may never get well again, and I have to deal with that—even if I won’t settle for it! But I could deal with it at home or I can deal with it abroad. And as my intention before I got sick was to travel, I would rather be sick abroad where I can still partially live my dreams. Travelling has given me back my sense of purpose. I’m finally able to feel like I’m achieving something instead of waiting around to get better and begin my life. This has given me a newfound positivity.

For many sufferers of ME/CFS, travelling is simply not an option; nor was it for me, only months ago. But it has changed a lot for me. So although sun, sea and travelling might not be my miracle cure, it is definitely the closest I’ve come to finding one for now! ■