“Why are you even traveling if you’re this sick?” the TSA border guard demanded with a look of disgust, as he quickly rifled through my backpack bulging with medications and mobility aids.
My smile faded, as I once again faced the full reality of my situation. Until this point, I had been having a relatively pain-free day — a rare occurrence — despite the excruciatingly long flight from Panama City to San Francisco.
This sort of interaction is sadly a common happening when I am on the road. Since the onset of my rare and not-yet fully understood chronic illness in 2017, I have existed in a constant state of hyper-awareness — of my body and my surroundings — a feeling that is hugely heightened during travel. And regardless of the progress in legislation, discrimination, inequitable treatment, and accessibility issues remain, including within the travel industry. Despite this, and often against my better judgment, I continue to travel, determined to live a life that brings me joy.
We travel but are often left out of the narrative
People who have a chronic illness and/or disability do travel. We just do so in a modified fashion and are often left out of the common travel narrative. Yet as many varieties of chronic illness and disabilities transcend race, gender, age, and class lines — we are the world’s fastest-growing minority.
In recent years, various bloggers and social media platforms have brought increased visibility and representation to those who opt to travel or work in the industry, but there remains a sense of exclusion. Although we know all bodies are worthy of being treated with dignity and respect, we are bypassed by mainstream media for a Western standard of beauty and an “ideal” body type.
The future of travel amid increasing health problems worldwide
Amid the COVID-19 pandemic, I have heard parallels of my story, of numerous individuals remaining ill long after prescribed timelines, existing in an uncertain liminal state, abandoned by the very medical system tasked to relieve their pain.
Here in Canada, like much of the world, the healthcare system has long been overwhelmed and underfunded, and in many ways, relies on outdated and flawed testing for many chronic illnesses. And it comes as no surprise that those most affected include the often overlapping BIPOC, queer, and disabled communities.
My journey to diagnosis is not unique; years of disbelief by the medical establishment, while progressively deteriorating, followed by lingering illness despite guidelines that stated I should be stabilizing. I know too well the frustrating road that awaits those who remain ill after surviving COVID-19.
While this increasing number of chronically ill individuals will change the future trajectory of the travel industry, chronic illness and disability do not mean the end of travel. With minor modifications and accessibility tips, it is possible to safely continue living one’s dream. Today, my body, although altered, is capable of many things, and travel remains one of them.
Tips to make travel safer
Although accessibility standards differ by country, and the variety of chronic illnesses and disabilities makes a comprehensive list of tips for travel difficult, hopefully the following guide can make travel a bit smoother.
Expect higher costs for medical care with limited travel insurance
The reality of travel with any sort of health issue, particularly immunocompromised status, often means additional costs not incurred by many other travelers.
For example, a huge amount of travel insurance plans do not cover pre-existing conditions, and these conditions, as well as recent hospitalizations and specialists’ appointments, must be disclosed, resulting in expensive and limited coverage. Hospitalizations may also have to be paid for out of pocket. I have experienced the medical system throughout the world, and have found wonderful levels of care from places such as El Salvador and Ukraine — but keep in mind costs will vary according to geographical area. If you need to stick to a budget, it is highly advisable to start here and plan your trip around this factor alone.
Plan ahead for accessibility
The days of spontaneous last-minute trips are, unfortunately, often no longer feasible for someone like me. However — even with the threat of COVID-19 — this does not mean that travel is not possible.
I have sailed from Panama to Colombia, and I have trekked in the jungles of Petén, Guatemala, in a back brace. I simply break my journeys up into manageable three-hour chunks — my time limit before my spine seizes up. It often takes me longer to reach my destination, but I greatly appreciate the unexpected places that I have experienced along the road.
For example, one year I was physically unable to handle a long bus journey to Tikal in Guatemala. Instead, I stayed behind to explore lesser-known archaeological sites, such as Zaculeu and Tak’alik Ab’aj in the Western Highlands, that I would have never experienced had I been capable of following the traditional backpacking route.
What has helped me is thoroughly researching countries beforehand, as well as visiting disability-related websites and social media groups for tips and information. Some great resources include But You Don’t Look Sick?, which features articles and tips on travel with chronic illness or invisible disability and Disabled World Travel, which has a variety of guides on accessible tourism. On social media, many voices can be found simply by searching under the hashtag #disabledtravel.
I would also suggest contacting airlines about mobility aids, as well as the option of pre-boarding. I require wheelchair assistance at the airport but can walk short distances. Many airports have required me to walk from point-to-point for pickup, which may be a problem for certain travelers. I also use a cane and storing it safely near me is quite difficult. I often book seats near the back of the plane, allowing me to store my cane behind my seat, instead of risking breakage in the overhead bins. Travel with other types of mobility aids can be difficult as well, with frequent reports of damage, so it is best to have a plan in case of emergency. It is also wise to research your rights beforehand on the Department of Transportation’s website.
Plan ahead for other types of accessibility, such as medication
However, it is not just accessibility in physical spaces that must be considered. It may also be difficult to access required medications while abroad, while travel with a large supply of long-term medication or syringes can be a problem as well.
My carry-on is regularly flagged, as border guards scrutinize my three-month supply of medication in bewilderment. In addition, certain types of medications require a medical practitioner’s note, some cannot be carried in large quantities, and others are simply banned in various countries. On a recent trip to Georgia and Turkey, I was forced to leave behind medication or risk legal trouble. Researching country laws before booking a trip, especially if these medications are crucial, is a great way to start. I would suggest browsing through a general list of commonly banned medications and checking with your destination country’s foreign embassy, as well as the International Narcotics Control Board.
Plan for the worst-case scenario
Despite my optimism, I always prepare for the worst. Keep all important documents handy in case of emergency, including lists of medications, conditions, and addresses in the country’s language. Learning parts of the body and basic medical terms is also recommended.
During my many hospitalizations, some of which were in Latin America, I have been grateful that I speak fairly fluent Spanish. However, I had to do work to get my medical language skills honed and I can now confidently describe my condition in four different languages. If languages are not your thing, apps like Google Translate, with the option of playing translation aloud, can be an absolute lifeline — just make sure you get a local SIM that gives you internet access and an extra level of security.
Pack only essentials
Although this is not always practical, try to pack only essentials, and only what you can manage on your own. Although many individuals have helped me along my journey throughout my travels, oftentimes, I have had to handle my luggage on my own.
I cannot lift more than five pounds but have become such an expert packer that I can easily travel for two months with a back roller, back brace, heating pad, medications, and clothing in a small backpack.
Organize accommodation in advance
Accommodation accessibility is not often as described on websites, so it is best to double-check and book ahead.
I always book the bottom bunk in dorms if possible and look for a place with elevator access or minimal flights of stairs. I also ask that my rooms are not cleaned with harsh chemicals, and many oblige by using vinegar and water instead. With that being said, I normally do a quick clean of the room myself. Stronger products may be required during the pandemic, of course, so pack a good supply of disinfectant wipes.
Be flexible and accept that plans may change to avoid disappointment
Finally, my most important piece of advice while traveling is to allow for flexibility. If your body is telling you no, know your limits, prioritize, and rest.
I was admitted to the hospital three days into my most recent trip to El Salvador, which forced me to cancel my entire itinerary along the Ruta de las Flores into the northern Morazán Department. Instead, I headed to the beach, slowly recovering in laid-back Quintana Roo, Mexico. This allowed me to continue my trip in a beautiful destination at a time when attempting mountainous curving roads would have been impossible.