Travelling with a Chronic Illness: Sheryl’s Story
We spoke to Sheryl, founder of A Chronic Voice (previously featured on our top 8 women bloggers article) about her experiences of travelling with chronic conditions. Read below for her story, in which she explains where her passion for travelling came from, shares some of her adventures and a list of useful tips for people travelling with a chronic illness.
The importance of travelling
I have a huge love for travelling to places that are a little off-the-grid, which is something my dad instilled in me as a kid. We’d travel to ‘non-touristy’ destinations and stay with the locals. He loved that ‘authenticity’ where we’d get to experience what life was like for others. Holidays for me, whilst growing up, were never in a luxury hotel (though yes I do enjoy that now, too!).
I think that travelling as a child taught me some important life lessons that surprisingly, also apply to managing chronic illness. It is a reminder that there is no ‘normal’, which is a comforting and confident thought as someone who’s chronically ill. I always also feel a sense of liberation. The world is a big place. The possibilities are endless. It truly is your oyster, and there is so much space and potential for me, yet.
Travelling with chronic illness
Unfortunately, chronic illnesses are scary things to carry along with my backpack and weigh me down the most. Whilst pain flares from Lupus or Sjögren’s Syndrome can be horrific, it is my blood clotting disorder, Antiphospholipid Syndrome, that I worry about the most. I can pretty much bleed or clot to death at any time and would require immediate emergency attention and/or blood transfusion. My blood type is rare too with autoantibodies, which makes it even trickier.
Many of the places I’ve travelled to do not even have a hospital. But I tell myself that the dreams I have are bigger than my fears, and it’s something I have to do in my lifetime. I just need to plan as carefully as I can and leave the rest up to the journey. My take is that even a healthy person can die crossing the road.
I would say that my most memorable travel experience was my month-long Trans-Mongolian/Siberian trip. We travelled from China to Russia by train and foot and finished up in Norway by air. I was fortunate that two friends joined me at the very last minute; it’s always better with a company when you’re ill.
Tips for travellers with chronic illnesses
Here are my biggest tips for travelling when you’re chronically ill:
- Always bring extras and split your medications up into different bags, in case one goes missing. If are travelling with friends, put some in their bags, too.
- Always carry a few copies of a summary from your doctor about your medical conditions, with the top risks highlighted. Also carry a permission slip for your medications, so that you can board transportation smoothly.
- If you rely on certain over-the-counter prescriptions for pain relief, bring some along. You may not be able to buy them depending on the country. Or the formulation might be different.
- Print copies of your hotel bookings in the local alphabet, and save maps to the closest hospitals or clinics offline. Due to language differences, it’s much easier and faster to show a printed copy.
- If you have travel buddies, run them through your emergency protocol. I have epilepsy too, so I make sure that they know what to do if I get a seizure. Or if I get a panic attack, or cannot speak up for myself.
- You will find that people in far-flung places are generally warmer and more helpful than in the city. So whilst access to good medical care may be scarce, people will try their best to help you out.
- If you do not feel ‘right’ or well at any point in time or don’t feel like an activity is safe, don’t push it. You don’t have to prove anything to anyone, not even to yourself. Your health always comes first.
- I sync my transport and hotel bookings to a DropBox folder, which I share with my parents. They can always check up on the dates, addresses and contact information for where I’m supposed to be and when. In case of an emergency where they need to come to get me, or if I’ve disappeared for too long, this information is extremely useful.
- For those with APS like me, I bring my CoaguChek kit with me so that I can check my INR ratio anytime. This gives me peace of mind to know that my blood clotting time is within range. This is important because diets and eating times change so much whilst on the road, which can affect your INR ratio quite a bit.
- Be mentally prepared for the worst-case scenario at all times, and have a backup plan (B, C, D, etc). For example, we were riding horses in Mongolia that were ill-trained and unruly. It wasn’t an activity we were familiar with, either. Before getting on, I had already laid out my ‘plan’ if my horse went berserk.
True enough, something set one of them off, and the entire team went wild. The toughest guy in the group got thrown off and so did my friend, who blacked out and had bad soft tissue damage.
My horse ran the furthest, but I managed to cling on, as I had reacted by instinct from the prep I gave my brain beforehand. I clung onto the reins immediately and started singing to my horse until it calmed down.
If I had been the one to be thrown off, it would possibly mean death due to excessive bleeding and clotting. I also have weak bones from long-term and high-dose steroid usage.
Happy adventures to you!
Sheryl comes from the sunny island of Singapore, and blogs about health, wellness and chronic illness on A Chronic Voice.
She lives with multiple chronic illnesses and autoimmune disorders, namely: Antiphospholipid Syndrome, Lupus (SLE), Sjögren’s Syndrome Epilepsy, PSVT (a heart rhythm disorder), has a repaired mitral valve, clinical depression and anxiety. She’s also had four near-death experiences in her life!
She has an energetic sheltie called Talisker that keeps her on her aching toes, and lovely cockatiels and budgies that love to nap on her shoulder as she works.
Do you still have questions about travelling or need any tips? Head over to our community Facebook group: Together for Better Days, a safe space for people who experience chronic pain to come together for support and advice on a range of topics.