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DisAdventure! Advice for world travelers (and would-be travelers) with disabilities and chronic conditions

by Jocelyn Tomkinson (reprinted with kind permission from her excellent blog: WheelsUp!)

I have a congenital spinal cord injury (SCI) as well as chronic neuropathic pain, so I use a wheelchair full-time, and have an implanted biomedical device for pain control. I write from the perspective of a person with a physical disability, although I think a lot of this advice could be transferable to other conditions such as mental health, learning, or sensory impairments.

Born to travel

Most of all, I am born to travel, and my goals are to visit every country before I die, and to help other people discover the traveling life in whatever way works best for them! I've traveled to the US (Washington DC, Hawaii, Pennsylvania, Washington and Texas), all over Canada, Mexico, the UK, Northern Ireland and Ireland; Kosovo (Former Yugoslavia), and Australia. In my other life I'm a graduate student in Global Health, so I also get to travel for a living. (Yay!)

I've found that travel with a chronic condition is much like traveling with a disability, and often the preparations needed are very similar to those any astute, prepared, pragmatic traveler would make, regardless of ability.

The two best pieces of advice I can give are for travelers to 1) be prepared, and 2) be practical.

Be prepared

1. Be vigilant: Pay attention to your body signals, so if you have to, plan a little break (tea time works well if you are in a country that observes this oh-so-civilized custom.) Australia was lovely for this, because I could stop at the ubiquitous coffee/tea shops, have a "cuppa" and regroup.

2. Know your needs regarding distances. I recognized right away that as a solo "chairpacker," I needed to minimize distances and particularly the distances traveled from train stations and airports while carrying my own bags.

Being a student, I'm a bit of a cheapie— I like to choose my hostels partly on cost—but in this area I compromised. I almost always stayed in hostels closest to the centre of town, across the street from train stations, bus depots and chose those with some sort of convenient access to the airport if that's how I was getting there.

jocelyn tomkinson 3. Decide your priorities for your trip in advance: Are you wanting to see the most in a short amount of time? Or do you want to get to know more about just a few places and really experience the local environment? Either way, know what you are looking for, and then decide your accommodations and modes of travel accordingly.

I "chairpacked" around England in 2002, and I realized that there were only three areas I really wanted to see. I chose my hostels and trains based on that, and got to use my time more wisely in each area. I also didn't put pressure on myself to see more and more, and was able to put my energy into seeing the things I wanted to see.

4. Get a GOOD travel book (not a cheap one!) and do your homework! It's tempting to choose things as you go, but to be honest, it's not the best or healthiest way to go. Do your homework before you go by checking sites like Lonely Planet and talking to other people -nyou know who've gone to those areas.

If you have particular medical or supply needs relating to your condition, try to identify places along your journey that you could get those if you needed them. I have a biomedical implant that I have to have checked and refilled every three months, and in case of emergency it's important for me to know the place nearest to where I am traveling that can deal with devices like mine. Before I leave for my trip, I contact my home clinic or the manufacturer of my pump and they give me the contact information for the nearest clinic to where I'll be.

5. Decide your "non-negotiables" early: Do you need a nap twice a day? Regular and consistent meals? Can't sleep without a proper mattress and sheets? My advice here is, decide your non-negotiables for a healthy, happy trip and you will be better for it. If you're like me, you constantly push yourself to overlook the needs that chronic conditions place on you (like a full nights' sleep, in my case), but this is more likely to result in frustration.

Choose those things you are welcome to compromise on, and then stick to your guns! Accept no opposition from ornery airport officials or bored hostel clerks! (And don't forget to budget for it.) A supportive mattress or a full nights' sleep might cost you more (than, say, sleeping over night in the airport) but it's cheaper than wasting several days of your trip lost to complications from your condition.

6. Pack for the worst, expect the best. (see "practical tips" below!)

7. RELAX. My policy is that it's no vacation if you are too wrapped up in your condition to enjoy yourself. Do what you need to do to take care of yourself, and then concentrate on your travels. In life as in travel, I try my best to maintain some control over my health, and after that, sometimes I make decisions in order to ensure that my health isn't taking over my life!

Be practical

Okay, now for the practical advice:

1. Pack a "survival kit" with your basic needs, information and important supplies, and always keep it in your carry-on. NEVER check this sort of baggage, and don't let porters deal with it. If I could, I'd never let the airport folks deal with my chair. (Thankfully they've only lost it once or twice!)

For myself, I have a few medications, some cash money, my address book, my medic-alert card, a letter with the names and contacts of my specialists, and the last telemetry for my pump, plus a spare of any medical supplies I need, such as catheters. I've gotten my kit down to the size of a small envelope that fits inside the slingpack I use as my purse when I travel.

2. Keep dried fruit, trail mix, granola bars, or other foods in your survival kit that will help stave off the hunger pangs when the dining car runs out of $8 peanuts. You can't count on food always being available and convenient, and good eating habits can positively influence many chronic conditions. The New York Times travel section has some great suggestions about travel-friendly foods.

3. Carry a spare prescription for any medications you will need regularly. I tend to buy all of the meds I'll need at home, because my insurance will cover it that way.

Keep in mind, medical systems in other countries may be very different than at home, not to mention laws! I take strong pain medicine on occasion, the type that in some countries can be considered a restricted substance. As a result, I carry a paper version of the prescription in case police or medical professionals need to verify it. This also helps in case your meds are lost, stolen or damaged during your travels.

4. Let your doctor know you are going, and if you are worried about it, leave a letter in your file giving permission for your doctor to release information or consult on your case while you are gone if you request it. This might be helpful in the event of an emergency and you aren't able to consult doctors in the host country who know anything about your condition.

5. Always, always, always travel with medical insurance!

6. If you have medical equipment, like my wheelchair, familiarize yourself with its care and repair. Consider bringing a repair kit with you. I always carry a patch kit for my tires when I'm traveling.

7. Be prepared to be your own best friend during this trip: Advocate for yourself and your travel needs, and be flexible and adaptable. Don't expect everything to go as planned or even as you need it to go, but instead, think ahead and be willing to consider alternate plans. This sort of attitude goes a long way toward reducing stress and disappointment while putting you in the best frame of mind to totally enjoy yourself!

Jocelyn describes herself as a grad-student/ blogger/ girl-about-globe. She was born with a spinal cord tumor and has used a wheelchair since the age of eight, and writes about global health, disability, travel, and chronic illness. When not surfing the 'net, saving the world or reading endless journal articles, she can be found writing for her various blogs: awaketodream.net, wheelsup.awaketodream.net and publichealthstudents.awaketodream.net . Jocelyn is currently living in Melbourne, Australia but calls Vancouver, Canada home.

Posted: 7/20/2007 in Coping

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