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

Disease Envy

I am so very jealous. I am jealous to the point that I am angry. I am jealous to the point that I scoff in your general direction. I am jealous because you have cancer. Or diabetes. Or rheumatoid arthritis. Or Parkinson's. Or lyme disease. Or just about anything else. I am jealous because you have it and a bazillion other people have it and because you and those bazillion other people have each other. And I feel so very all alone.

Being diagnosed with intimal fibromuscular dysplasia first came as a relief—I got a name for what has been wrong with me. Within days of my diagnosis, I saw a post on the Mayo Clinic discussion boards from a young woman suffering gastrointestinal problems who had passed all GI workups with flying colors and who, despite medication, had uncontrolled blood pressure. The symptoms echoed my own. Another woman named Kari responded that the young woman might want to have her vascular system looked at—a comment with which I completely agreed and found unusual for someone to make. I posted as much and in no time Kari and I exchanged messages and discovered we share the FMD diagnosis. Since then I have made friends online with twelve other FMDers.

Read that again—twelve. Granted, I'm new at this, so I haven't met the other 70 or so people who "like" the FMDSA's Facebook page. Some of those who like the page aren't patients though—they're friends and family members of patients. Using those numbers, FMD patients number fewer than two per state. No, not everyone who has FMD is on Facebook. No, not everyone who has FMD has been diagnosed. But COME THE FRIG ON! We're like some freakish pygmy tribe, and the grand irony is that we'd be jerks to want more tribal members. FMD has no real treatment and no cure. Who would wish that on anyone, even if it meant a new friend? "You have FMD? I have FMD! Let's get sick and die together, yay!"

As even further isolation, I do not have the primary form of FMD. I have the rare version of the rare disease. I've met one other girl who has it. She lives in South Africa. I've asked around the FMD community looking for other IFMD patients. So far—no luck. It's me and my new South African sister. She is younger than I am and is scheduled for a desperately needed surgery to bypass her abdominal arteries—the same surgery that I had at age 25—and with the same doctor in Cleveland who made my diagnosis. However, she's traveling to the United States from South Africa, which costs a pretty penny, never mind the surgery itself. If you've got a mind to get involved and help her cause, that would be awesome. I really can't have her going out on me. Do you have any idea how it would feel to be the ONLY person I know with IFMD?

And so I'm jealous. Jealous of all you people with your more common diseases that everyone knows someone who has. Jealous of your theme colors (particularly you breast cancer patients and your pink—really co-opted that one there didn't you?). I'm jealous of your fun runs and baseball theme nights and famous spokespersons. In reality, I get it. The diseases that get all the attention are the ones that have the most likelihood to occur. They're the diseases that people have learned to be afraid of and so great research is done to find their cure and great shows of comradeship and support are made. I get it. Having a more commonly occurring disease is still a potentially devastating experience, and an individual's suffering is made no less simply because a disease is a household name.

However, I am asking you all to do this—please think of the others of us who have a rare disease. Please think of those of us who do not have the awesome numbers and networks and funding and fights for a cure. Support us because so few do. Support us because you've never heard of our disease. Support us because we're not going to send you address labels or a fancy calendar or a t-shirt to wear out jogging. Support us because we're lonely and we're scared—just like everybody else.

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