Travel. A word that used to incite wanderlust with dreams of chilly Chilean mountains and Italian pasta wrapped artistically around a fork. But when you live with a chronic illness like rheumatoid arthritis, it can incite worry and fear of the ‘what ifs.’ When it feels like you can barely manage your health at home, how are you supposed to do it on the road, and potentially in front of people who don’t ‘get it’?
Like with most things I’ve learned while living with several chronic illnesses, it’s about taking baby steps and being prepared.
Practice makes possible
Getting over the mental hurdle of trying travel can be the toughest part. Practicing by taking smaller trips can give you the confidence to explore the idea of greater travel.
One of the first advocacy opportunities I was given was to attend a small conference here in Los Angeles. Because I knew I could not comfortably handle the all day event AND have enough mental and physical energy to drive back and forth, I tried the train. Having napped on the train to and from, I returned home a happy and more confident girl. I knew I had it in me to explore my world again.
Become a #ChronicLife ‘prepper’
I carry two bags with me now, even when traveling across town. One is my “Britt bag.” It has things that care for me as a person: sunglasses, wallet, maybe a great pair of orthotic shoes, etc. The other is my “chronic illness bag” with all the medical essentials I’ll need to get me thru the duration of my trip. If I am flying , this bag NEVER LEAVES MY SIDE. The last thing I want to do is have to track down prescriptions and my trusted items on the road.
Traveling with injectables
You can totally go through the airport and TSA with your injectable medications. Bring a small soft-sided cooler (some medications provide these), your doctor’s business card, and a frozen ice pack. Make sure the ice pack is frozen because fun fact: unfrozen ice packs glow the same color as some explosives and this tends to alarm TSA agents Bring an extra Ziploc bag with you, just in case you need more ice on the way. Lastly relax, this isn’t as big of a worry as you might fear!
Prepare for people
If you’re meeting people that you haven’t seen in a long time, they may ask questions about your health, or assume they know how to be ‘helpful.’ The only way to improve this is through communication. Make sure to voice your needs. Whether you need to slow down, can’t eat at a certain restaurant, or need to not talk about your disease, tell them!
Be prepared to voice your needs to strangers, as well. When traveling with an invisible illness, I find the best attitude to adopt is to know that I am worthy of using available help. I use disability pre-boarding when I know it’ll be tough for me to get on and off the plane. Notify an agent when you arrive, and they will give you the proper procedures for using this service – each airline is a little different. Sometimes I can move okay, but have absolutely. No. Energy. It is ok to request a wheelchair to help you through the airport in those cases too. And remember, you don’t have to divulge anything about your disease, only what makes you comfortable. If you need something, that is the end of that. No explanation necessary.
Prepare for unexpected events
Besides bringing the ‘just in case’ meds (I bring antivirals, antifungals, extra prednisone), I also prep myself mentally and physically in case I get sick, injured, or flare. Have the phone numbers of your doctors readily available, along with a current list of your medications and supplements. Be aware of where your medical insurance covers you. Some policies only cover you near home, while others support you internationally. If I am staying somewhere away from home, I locate the nearest ER & hospital. Having a plan in place can give you more peace of mind than you can imagine.
Be the MacGyver of your health
When I went to a music festival a couple of years ago, I was not prepared. Wanting to be a normal twenty-something, I roamed from stage to stage until my knees were the size of cantaloupes. I had no bag for ice, let alone ice. What I did have was a hankering for some kettlecorn and the bag it was in! After eating as much of the kettlecorn as I could stomach, I hobbled to another vendor and offered him a dollar to fill the bag part way with ice. I showed him my knees, and he promptly filled the bag – letting me keep my dollar.
Prepare your energy
I also prep my energy in advance. If I need to get across the insanity of Los Angeles to a doctor’s appointment, I give myself permission to fully rest the day before and after this trip. If I am traveling cross-country, I begin ‘storing’ my energy at least a week in advance, maybe more depending on the activities that are planned.
I have gone from being terrified of leaving the couch to regularly traveling across the country. While improved health has certainly made this more possible, releasing fear and learning to prepare has been the biggest help.
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