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. 

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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