Hurt Society: Planes, Trains & Automobiles — ePatient Travel Edition

My relationship with planes has changed over the years. I remember being little enough to curl up like a cat in my single seat and eventually having to stretch out to put my head in my mother's lap.

Trains have been much more of a novelty. As industry routes and freight trains once loaded with logs and coal have given way to cute touristy things and railway beds reclaimed as greenways, we have lost much of our connection to this great American mechanization.

As an only child, I always had the backseat to myself whenever we took family road trips, which may well be what lead to my penchant for naps, as a set of headphones and a pillow did much to block out the crackling AM sports radio to which my father always listened.

Regardless of the method, it's always held that so long as I have a window and music, I can travel for hours.

When I began flying on a regular basis for my advocacy work, I made one other small investment — ear plugs. I had no idea the difference they would make. Like my headphones, the ear plugs served to block things out. Crying babies, loud talkers, engine noise, and ill-timed pilot announcements ceased to exist. Suddenly I was so much less exhausted after my cross-country flights. Many of my days are spent working in near total silence, save for the cats thundering past, having received random signals from the feline planet and a collection of clock ticks and chimes. An airplane's constant droning roar was too much. It wore me down. It wore me out.

The downside to ear plugs is that others generally can not tell when one is wearing them, so an earnest attempt at conversation can lead to being misconstrued as rude. Note — it's not that I'm not paying attention to you; it's that I very purposefully have chosen not to hear you.

Given the holidays, many patients (and others) have travel slated. Seeing family and friends may have great sentimental appeal, but its reality is much more complex. If one has gotten a job, lost a job, gained weight, lost weight, dumped a lover or found one, bought a house or sold one, had surgery or opted out of one, started a new medication or stopped an old one; or any other combination that basically translates to living, my own advice about going to see those aforementioned friends and family involves deep breathing, happy place visualization, lots of tongue biting, and comfortable shoes to enable nice long walks. As the great Mick Jagger once said, we can't always get what we want, but we may well get what we need — a new perspective.

With that in mind come the following posts:

What can each of us do to help when we see someone who is having a tough time, even if they don’t look sick?
Susannah Fox

Make life easier for yourself when you travel by accepting help that is available, strategizing before you leave, asking for reasonable accommodations for problems that arise, and trying to keep the weight of your luggage down. Also contains a few specific ideas to make travel less trouble.

Annette McKinnon

The Transportation Security Administration can be friendly, provided one is willing to jump through certain hoops. 

Matthew Charron

All disabilities are not visible — but one mom to a rare disease patient explains that discrimination against invisible disabilities can be entirely less than subtle.
Melissa Hogan

Plan ahead to avoid common travel problems such as sleepiness and stiffness.
Mayo Clinic

Speaking of sleepiness and stiffness... here are some tips about sleeping in an airport.
Outside Online

And when it comes to flying, take this quiz to evaluate your savviness.
Outside Online

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Name:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season.