I can never adventure again.
That was my first thought when my doctor told me I had a genetic degenerative disorder. I was experiencing 4-8 joint subluxations a day, I’d lost the ability to run or ride a bike and was beginning to lose the ability to walk long distances. I was in 24/7 pain. I had intense fatigue and was sleeping 14+ hours a day. But I couldn’t imagine this being my future. The thing was, I’d been an adventurer from birth. I cycled across Europe and Africa with my family at 11. I ran through forests and beat the boys at everything as a kid. I backpacked and hiked as a teen. Travel has been my life, the source of almost every defining experience I’ve ever had. And now I had to give it up.
Of course, that was bullshit. Developing ehlers danlos didn’t mean my life was over. It didn’t even mean I had to give up my love of adventure. I just had to change how I traveled.
It’s been an intense year and a half as I’ve found my new normal and begun to travel again. I’ve been figuring things out by trial and error, but hey. I’m figuring them out. This is what I’ve learned so far:
Learn your limits
Travel and adventure don’t look the same for everyone. Figure out what works for you and don’t hate your body for being different. It’s still beautiful, it still allows you to explore the world in your own way. So instead of thinking about what you CAN’T do, think about what to experience next! Be gentle with yourself, realize your limits, and put your health first.
Don’t be afraid to ask others to slow down
This is a big one for me, as I don’t look like there’s anything wrong with me. I’m having to learn to speak up when I need a break or am in pain. Don’t think of yourself as a bother to other people. They don’t want you suffering, either. Take breaks, it’s fine.
Plan rest time
I schedule in time to sit down, do something quiet, or take a nap. If I’m wandering a city for a day, I take time to sit in a park or get coffee. Local bookshops and libraries are a lifesaver. If you’re doing something active, take a break to enjoy the scenery. Don’t push yourself to exhaustion without a rest plan.
It’s all too easy to fall into a place where we stop trying new things because we don’t believe in our abilities anymore. You might be surprised at what you can do! Don’t hurt yourself, obviously, but do set challenges that push you to achieve hard things. Setting and completing challenges is great for mental health and confidence.
Pack helpful things
Meds, heat pads, back support, your favorite tea, whatever helps you to feel better. I have a high-quality backpack that doesn’t cause my shoulders to subluxate and helps to evenly distribute weight. I also bring lotion with me everywhere I go so that my partner can help me put all my joints back together after a long travel day. I wear shoes that help keep my feet and ankles stable as I travel. I’m hoping to buy a walking stick to carry for the really bad days.
Plan more than you used to
Make things easier for yourself by planning everything in advance. No one wants to stand in long lines anymore or have to wrangle a ride to the hotel when they’re in pain. Reserve train tickets and taxis in advance so that you can show up and go. Figure out where the wheelchair stop is at museums and airports. Most will reserve a wheelchair in advance over the phone, no worries if it’s not needed on arrival. Invest in memberships with travel companies and gain access to comfy lounges. It’s the little things that will keep pain levels down. When planning a long-term trip, research and contact specialists and therapists in your destination. Finally, talk to other people with your condition who have traveled there before.
Benefits of traveling with a disability
Traveling to Guatemala and now to Europe has made me feel like I have my life back. Sure, traveling with physical issues requires extra planning, but it’s not all bad.
- Having adventures builds confidence – you’re not broken, you’re just differently abled. We can still live like we’re in an epic adventure novel.
- Meeting amazing people! I believe that most people are kind at heart. No matter where I am, people go out of their way to help me. I’ve had some great experiences.
- Living fully – we know that we can’t rely on our bodies to be perfect in the future. Having these issues has motivated me even more to travel and truly LIVE while I can.
- Seeing the world from a different perspective – by traveling with these challenges, we’re already getting an off-the-beaten-path experience. Through the need to go slowly, I’ve run into experiences I never would have had before.
These have been my experiences and my thoughts so far. Obviously, every situation is different and we all have to find our own ways, but by sharing knowledge we can tackle challenges together! Having different bodies doesn’t mean the world has denied us a life of adventure. We find new ways, we push forward, and we live all the more fiercely for it, whether at home or on the road.