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Flying the Friendly Skies and IC

(Submitted by Jill Osborne, ICN Founder)

In my early days as an IC support group leader, I heard a shocking story. A business man with IC was flying across the country on a major airline. He started having intense bladder pain and urgency. Unfortunately, there was a large line to the restroom and he didn't feel that he could wait. He found a flight attendant, explained that he had IC, was in great pain, and asked if he could go to the head of the line. The flight attendant looked him up and down, said "You don't look sick" and sent him to the end line. After a minute or so of waiting, he passed out from the pain. True story? I think it is though I've never actually talked with the gentleman. But, it's certainly something that most IC patients worry about.

One of the hardest parts of having IC is that it can make travelling uncomfortable, if not impossible during flares. Why? The vibration of driving in a car, or flying, can greatly exacerbate our symptoms. Combine that with worrying about having access to a restroom or, god forbid, a flight attendant with an attitude, it makes sense that many patients prefer to stay closer to home.

However, there is hope. The US Department of Transportation has now created a toll free hotline for Air Travellers with Disabilities. (800-778-4838) The hotline has two main purposes: (1) education and (2) assistance in resolving disability related air-travel problems. Hotline operators are well versed in the Air Carrier Access Act and can provide travellers with on-the-spot general information about your rights. They can also assist travellers in resolving real-time problems with air carriers. Hotline Duty Officers can contact air carriers directly to resolve problems.

I called the hotline today to explain the plight of IC patients and our often desperate need for restroom access and received some great suggestions.

1. Prior to travel, ask your physician for a letter that you can carry in your wallet that discusses your IC and need for immediate restroom access. A medic alert card or bracelet can also be very helpful in these situations.
2. When your making your reservation, let them know that you have a disability that requires access to the restroom. Get that documented on your record. Ask for a seat near the restroom and on the aisle. When I'm flying, I always prefer to sit at the very near the restroom either at the front or the back of the plane so that I can jump up in a second and use it, even if it's the last row on the plane. (Don't forget to ask for information on their meal alternatives so that you can select a meal that will be IC friendly.
3. When you arrive at the airport and check your bags, remind airline staff that you have a disability and require assistance on the plane. If your seat is not adequate, ask them to relocate you to a better seat. Sometimes they even upgrade to business class. Gate personnel are often very good at facilitating last minute changes.
4. When you board, find the lead flight attendant or for the attendant of your section. Show them your physicians letter and let them know that you have a disability and may need restroom access urgently. Ask for their support and suggestions on how you can work with them.

I have a few extra strategies that I use as well. I never leave my house for the airport without first putting a Bodiheat heating pad on. Why? The heat soothes those muscles and helps to prevent painful spasms. Remember, there's no microwave on a plane so bringing a microwaveable heating pad is a waste of time. The Bodiheat pads deliver steady comforting heat for ten or more hours at a time. You can also ask the Flight Attendant for some of the heated washcloths to be put in a plastic bag. These serve in a pinch. I also have prescriptions to use if needed.

My bathroom strategy may be slightly obsessive but it works. I take an Airport Express bus to the nearest airport (SFO). It's a two hour drive that, by car, might be faster but I'll usually have to stop several times to use the restroom. The bus, however, has its own restroom that is well worth the convenience. Once at the airport, I use the restroom in the air terminal immediately before I board. Then, after I've found my seat and the plane is nearly ready to taxi, I use the restroom again.. (Having a close seat makes this much easier.) Then, as soon as we've reached altitude, I'll use it for a third time. It's usually only about 30 minutes after takeoff before the Captain takes off the "fasten seat belt" sign and I can easily handle that. I also never wait until my bladder pain is bad. If it's a long flight, I'll use the restroom several times so that if we encounter turbulence, I won't have to worry about sitting there in pain. And, in a worse case scenario, I bring a pack of travel johns that I can use at my seat or in a bathroom that might be out of order.

I do have a funny story. I was flying last year and had fallen asleep in my seat only to wake up with a bang. It turns out that my knee had fallen into the aisle. You guessed it. The flight attendant was moving her cart rapidly down the plane and ran right into it. We all thought that my knee cap must have been broken because it made a such a loud bang. Luckily, it wasn't. But, I must say that she was so worried that she was willing to do almost anything to help. So, all I said was "Just let me use the restroom whenever needed" and I'll be happy. Darned if I didn't get great treatment. Now I'm certainly not suggesting that you hurt yourself.. but it does show that flight attendants can work with you. By the end of the flight, we were all laughing about it and I assured her that I wasn't hurt.

If I had wanted to complain, either before or after the flight, I could have asked to speak with the Airline's Complaint Resolution Officer (CRO). Each airline has one based at the airport or available by phone. If you feel that the airline is not treating you well, you can ask any airline personnel to connect you with the CRO. It is their job to resolve the situation and they often have to educate staff about how to properly handle someone with special needs. Don't be passive. If you're upset and want action taken, ask for that CRO immediately. That's their job and they do it well!

So, as many of you consider travelling during the holidays, don't assume that you can't. With proper preparation, planning and a healthy dose of assertiveness, you can conquer the friendly skies once again!

By Jill Osborne - September 10, 2003

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