Traveling With an Invisible Disability

Traveling with a mostly invisible illness is difficult. It can make you sound neurotic when your concerns about problems seem trivial to others who have the power to help you. Generally I take advantage of any help that is available. When I went to California for the Medicine X Conference in September I booked a flight with no stopovers that went direct to San Francisco. That was a big plus. 

Air Canada offers help to people with disabilities who register in advance. In practical terms this means after I check in they will take me that long distance to the gates at the airport in a wheelchair or little vehicle. I'll give a gold star to Air Canada for making life easier, without even a fishy eye as in "You look perfectly fine to me". The other issue with the wheel chair is the that going through customs usually involves a long line and standing in line is actually harder than walking. Missing that experience helps me.

I do go somewhat out of my way to remind myself, and to help others realize that I can't carry heavy things. When travelling I invariably wear my wrist braces because it's a lot easier than explaining over and over.

I travel with older splints so breakage or loss will be less critical.

On the way home to Toronto from San Francisco I asked at the gate if there were any rows that had empty seats but was told the flight was fully booked. An hour into the flight when I got up and looked around there were many empty seats. After I explained to the flight attendant that my fused wrists meant it was a problem to maneuver in a small space they gave me another seat. The other two people in my row were delighted to see me leave. That's an example of the value of making a reasonable request in a non-confrontational way

I've learned a good lesson about getting cheaper hotel rooms. This doesn't work when the hotel you want to be in has a big conference, since they are generally full in that situation, but if not I check the prices on the cheap sites like Trip Advisor for instance. Once I have that price I phone the hotel direct and say I would like to book a room but I found it listed cheaper online. Usually they will match or better that price for you. This was a tip from a front desk person in Nanaimo and has worked very well as a money saver. The hotels get so little money from the online sites that when you book that way you are often put in a little room by the ice machine. 

The harbour in Nanaimo from our hotel room

I also ask for a room with grab bars in the bathroom. That helps and usually the rooms have other useful touches for disabled guests. 

Customs and pills is a worry: The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers and gives me "official" pill vials. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill pockets".

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and they last weeks between fillings.

For my one "personal item" allowed on the plane in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

For the plane I take my Tranquil Eyes goggles in case it was too drafty or bright during the flight. Using them can help dry eyes from Sjogren's Syndrome, help you sleep or ease a migraine. 

Tranquil eyes

This post is part of a blog carnival for the Hurt Society Blog Carnival ePatient Travel Edition. Link to be added