I’M A DEDICATED MILLENNIAL TRAVELER — and I have myasthenia gravis, a neuro-muscular autoimmune disease. I looked up at the Hollywood Sign far above and wondered what I was doing. My friend Tim was using the hike to introduce me to Richard, a new guy he’d just started dating. I thought about how common aggravators of my disease are heat and strenuous physical activity and looked up the long hot trail again.
“Nice to meet you, Richard!” I said. The die was cast. The guys bounced up the trail. I set out after them.
We’d been climbing for a while when Tim asked, “Are we going to fast for you, Liz?”
“You guys are great! YOU GUYS ARE AWESOME! I’m just taking my time, that’s all. Enjoying this gorgeous scenery!” My forced enthusiasm sounded as contrived as it actually was. We were halfway up the first steep hill, and the sound of my breathing resembled that my late chain smoking great-grandfather.
“Liz, do you need a break?” Tim said.
“Oh, I’m fine! I’ll catch up! You guys go!” I gasped.
Tim and Richard jogged back down to meet me and insisted we take a break. Tim gently brought up my Myasthenia gravis and asked if it was bothering me. I whispered yes. Then, as I began to slowly open up to them, I realized half of my battle was the fact that I was stuffing my fear and discomfort. Once I started expressing how the MG made me feel fatigued through physical exertions, Richard was deeply understanding, even fascinated. Our conversation quickly escalated from being trite and superficial to our health, emotions, and fears.
When we made it to the top of the hill and overlooked the city below us, I knew I had accomplished not only my physical endeavor, but leaped an emotional hurdle as well.
If you are – or know – a traveler with physical challenges, uknowing these five gifts of understanding will make the trip easier for everyone.
Five lessons you’ll learn when traveling with a chronic illness:
1) You will no longer attempt to be discreet about the fact that your backpack or purse is a portable full-service pharmacy. Strangers have looked in horror at the plethora of little orange bottles inside my bag. I like to play with their assumptions when this happens. I let my eyelids become extra heavy and give them a lop-sided grin.
2) You will learn the importance of planning and time management. If I know I am going on a strenuous hike or taking part in a challenging physical activity, I have to plan on time to recuperate. I’m not like a lot of my friends in their twenties who can go, go, go. I can go, go, take a nap, eat and drink some water, take my meds, and then go. If I were to forget meds on a trip, it would be over, so before I leave I go into autopilot mode, going over a checklist every time I pack, even for meds I’ve been taking for years.
3) You’ll become a professional power napper/rester. My travel companions are used to me slumping over in the passenger’s seat of a car or bus – whether I’m actually asleep or not, I close my eyes and rest all of my muscles like a ragdoll so I can conserve my energy and keep going. My friends lovingly refer to it as “recharging”. If my battery gets too low and I don’t watch it, I’m done for the day and that’s no fun for any of us.
4) If you’re worried about people judging you or finding out you have a physical challenge, you’ll drive yourself insane. Any real friend or travel companion won’t judge you. I used to have a crippling fear that if I was open about my MG, others would think I was looking for self-pity, or exaggerating. I also thought that if they saw me having a drink or a good time, they’d think believe the whole disease card was nothing but a card. I’ve learned to forget what other people think and do what makes me feel good. If anything, having chronic illness has given me a carpe diem attitude that can often make me the life of the party.
5) You’ll find that even though traveling with an illness is more challenging, doing it is also one of the most rewarding things you can experience. When I got to the Hollywood sign, I felt on top of the world. I hadn’t let my illness hold me back or stop me, and the gorgeous view was that much sweeter. I was determined to not let the tightening in my chest from shallowed breathing cloud my experience. I concentrated on the surrounding natural beauty. The way back down was a lot easier knowing I had conquered another hurdle, no matter how small it may have seemed to others. Every day living fully alive with a chronic illness is a victorious fight and celebration. What may be an everyday mundane moment to others becomes exquisitely powerful, meaningful and unforgettable.
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