My Life with Ehlers Danlos: Finding Your Tribe When You’re Rare
June 9, 2017
by Tiffany Early
A few weeks ago, I went to Disney World- the absolute happiest place on earth. While there, I had my first experience renting a scooter rather than using my trusty manual wheelchair named Snookie. (That really has very little to do with this story, though, other than to set the scene.) My husband and I were waiting for “Fantasmic!” to begin (a firework/ light show in Disney’s Hollywood Studios.) The accessible seating required Joe to sit on bleachers in front of me, and I sat directly behind him in my scooter. For the most part, talking to Joe while we waited for the show to begin was impossible- unless I wanted to shout.
I’m typically not the friendliest person you’ll ever meet. I like meeting new people, but I also like idly staring at my phone and getting lost in my thoughts. However, the “wheelchair row” was packed tightly- like ‘don’t even think of sticking out your knees or elbows’ tight. It seemed polite to make conversation with the woman to my left whom I kept accidentally elbowing. We talked about the wonders of Mickey shaped pretzels for a minute before she said, “It’s nice to do something normal for once. I have doctors’ appointments all next week.”
What? Did she say doctors’ appointments? She’s so young and pretty! Surely, she isn’t sick! (I’m joking, friends. Of course, I know illness doesn’t discriminate based on age or looks.) I mentioned that I had a doctor’s appointment the day after we flew home and “Boom!” a new friendship was forged. This young woman shared her story of how she suddenly became sick with an undiagnosed illness with a very rare set of symptoms several years ago. She had been forced to leave her home to move in with her mother as her caregiver. She lost her career, her home, and many of her friends. As she told her story with tear filled eyes, my heart broke, because I could relate to her story on such a personal level.
When I told my new friend I understood what she had been through and that I believed her story, she yelled for her mother (sitting in the row in front of us). She excitedly exclaimed, “Mom! She understands! I found someone who doesn’t think I’m crazy! I feel like I’ve found my long-lost soul sister!”
So, while waiting to watch Disney’s Fantasmic, we cried and hugged and acted generally insane. It was a wonderful coincidence that became a blessing that my scooter was parked next to hers. For the entire show, we laughed and shared experiences. My new friend hadn’t ventured into the world of social media to seek comradery among the chronically ill yet. I was the first person she had met that had a similar experience to hers. I was encouraged by the strange coincidence that allowed me to make a new friend- even if our friendship only lasted until Mickey Mouse triumphed over evil, and there was a character boat parade to celebrate.
My point in all this is to seek your tribe, friends. It’s suffocating to live the sick life without anyone who understands. Finding people to validate your experience and lift you up when everything seems hopeless, means the difference between sinking and swimming in this scary world of chronic illness. Join a Facebook group for the chronically ill. Ask hospitals/ houses of worship if there is a local support group for chronically ill people in your area. Follow blogs by chronically ill writers. I’m not suggesting you remove all the “non-sick” people from your life. I’m simply suggesting that you enrich your life with people who understand.
Friends, we can’t change the fact that we’re sick. We didn’t choose this life. However, we can choose to enhance our experiences by adding those into our lives who can understand. I learned in my chance meeting with my Disney friend that there are still a lot of people wandering the road of chronic illness alone. In my opinion, that can’t continue. I’m increasing my effort to meet others who are chronically ill, and I encourage you to do the same. I can’t promise you a cure or a treatment, but I can promise you that you aren’t alone.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.
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