Today is Rare Disease Day worldwide! I figured what a perfect day to share a multi purpose post. I’ll be sharing my tips on traveling with a chronic illness (using my recent trip to Seattle and the San Juan Islands while dealing with MG symptoms as an example) and talk a little about the conundrum that is social media for the chronically ill.
Traveling with Chronic Illness
A fear inducing thought – planning a trip when you have no idea if you’ll feel up to doing all the wonderful adventurous plans you’ve made. Will you even make it out of your city? Growing up, my parents never hesitated to take us on trips. My first plane trip was at the ripe old age of one, where I took my first steps on the beaches of Hawaii. So while we had about a decade of good health for cross-country (bi-coastal family) and international travel (adventure loving parents), we have now had more time planning “sick friendly” vacations than “normal” ones. Here are my tips to make it more enjoyable.
- Travel with at least one person who can advocate for you. When I was younger, this was one of my parents. As I got older and started traveling more on my own, it meant having one person that was bombarded with MG information (haha just kidding they were usually willing to learn). Now, Travis is my advocate when we travel. I have never had to use an advocate while traveling for a serious medical emergency, but it is so important to have someone who can speak on your behalf if you are incapacitated. Even if it is as simple as making sure they check your medical ID bracelet or see your “cannot take” medication list. This is a two-fold tip because while it necessary in a serious medical situation to have an advocate, it is just as important to have someone to help you if you are traveling in a larger group. You need someone with you so you aren’t alone if you decide you can’t participate in an activity (and someone who is okay stepping back). The best part about family is that they all take turns being your advocate (or sometimes all at once!).
- Ask for accommodations when you need them. This one sucks. Not going to lie. When we arrived to the airport for our first flight to get to Seattle, we found out our connecting flight from Houston had been cancelled due to a mechanical problem. We were automatically rebooked on a new route through Chicago with a very short connection. I had a mini freak out because our options were limited flying out of a regional airport on a Friday evening. When I am in charge of booking my travel, I always give myself at least a 90 minute layover so I don’t have to run for a plane, because I physically can’t run! After some internal debating, I approached the ticketing agent at the gate and asked if there was anything they could do for me. Sometimes people are super unhelpful (which is why it is helpful to have an advocate traveling with you). Initially she didn’t provide me with any other options other than switching flights and having a 5 hour lay-over. Travis saw the look on my face and walked right back up to her and demanded they meet me at the gate with a wheelchair. I wanted to bury my head in my carry on at that point because I was embarrassed to ask for that. But we knew that I couldn’t run, and having that tag for “chair necessary” meant they would hold the plane for me while I was wheeled over. Because of weather we still ended up missing our connecting flight, so I was able to walk over of my own accord (yay long layovers), but the lesson here is that there is always a way to accommodate your need. This doesn’t just apply to airlines/trains/buses. Ask for accommodations from your travel buddies too! They may be more than willing to switch seats with you if you are starting to feel icky, or carry your bags if they are getting too hard to carry.
- Know that it is okay to take rest days. Another tough one! I love lists and researching fun things to do in new places. We made a list of all the things we wanted to do and see while we were in Seattle and in the San Juan Islands. And we didn’t do all of them! That’s okay. The experience of being there and seeing my parents in their new city in a way that didn’t cause me to feel like my diaphragm was going to stop working meant way more crossing everything off my list. Travis and my dad skied Mount Crystal one day while my mom and I slept in, had lattes, took long naps, and set up her new phone. Not the most exciting day, but it meant I had enough energy the next day to go wine tasting!
- Find places that have accessibility. I love to hike when I am physically capable, but that just was not going to happen this trip. My family has been to the San Juan Islands many times before, but Travis had never been! So to make sure we could all take in the view from Mount Constitution, we split up. My mom and I walked the first few hundred feet of the trail with my dad and Travis, turned back, and drove to the top. We all met up at the top to take in the gorgeous view. We also walked around the city some, but broke it up into different half days and arranged for my dad to meet us with the car on the day we went to Pike Place Market (it would have been too far for me to walk there and back after exploring the market). None of us felt like we missed out on the experience, and we were all able to participate to the best of our physical abilities.
The Conundrum of Social Media
The photos of our trip are gorgeous keepsakes to me. I am so thrilled with having reminders of such a great time with my parents. I have to say that sharing them has been something I struggled with. Because they aren’t accurate representations of how I am doing right now. I was able to do way more than I thought I would be capable of, but that came from careful planning, strategic naps, caffeine, food, and a compassionate and caring family surrounding me. Usually I don’t wear any makeup save some sunscreen and lip balm. Every day we were out and about (except rest days), I was wearing industrial strength concealer for my tired eyes and foundation, highlighter, and blush to give me color. I curled my eyelashes, put on my favorite eyeliner to brighten my eyes, and mascara to counteract the visual appearance of slightly droopy eyelids. I don’t think I am being dishonest by wearing makeup by any means. I mean to explain that you don’t see everything that goes on behind the scenes.
I used makeup to hide what I see as the physical manifestation of MG. You can’t see my blurry vision, the effort it takes to get a deep breath, or the way a muscle aches when it isn’t receiving the correct impulses from nerves. Most people can’t even tell when my eyes are drooping or my smile doesn’t want to work! I didn’t take photos of our slow mornings getting up and dressed (and the time needed to rest afterwards). I didn’t document my naps or mornings/afternoons resting. Even though they made the trip what it was, those weren’t the photos I wanted to share. I do a lot of honest sharing on social media to help raise awareness for MG. And I struggle with that because I can post these gorgeous photos all over social media and no one would know the amount of effort and planning that goes into even leisure activities. You don’t know the prayer and support it takes from my friends and family to get through the day.
This photo is a perfect example from July 2015. I was on oxygen basically the entire week I was in Breckenridge for my sister’s wedding (where I did not do a good job following my above advice, so please take it from someone who ignored said advice and has been dealing with a 8 month flare up!). But I didn’t want that in every single picture from the trip. I asked Travis to take the first one without my cannula. He snapped the second one just after the photo while I was putting it back on.
All of that is to say, I want to graciously caution you not to judge a person by their Facebook or Instagram. Some may see the photos from my trip and assume that MG is not a big deal. It is! I just chose what I wanted to share visually, and that’s okay too. I love being an MG advocate, but there are also times when I want to look better than I feel! I share this in hopes that others who are struggling with this conundrum know that they are not alone.