My Life with Ehlers-Danlos: Getting Underwear for Christmas
December 7, 2016
Do you remember the anticipation of seeing an unusually shaped package wrapped under the Christmas tree (or wherever your holiday gifts accumulated)?
I clearly remember staring at a lumpy package under the tree as a child and wondering what could possibly be in it. Maybe it was a Lite Brite? Or Cabbage Patch doll accessories? Maybe it was even something really grown up- like make up! Christmas morning would arrive, and I would be itching to open the oddly shaped gift first. Upon opening it, I realized it was a couple packs of days of the week underwear. Days of the week underwear? Are you kidding me? Who among us is using their unmentionables as a calendar? How on earth is that a logical gift for anyone? But . . . because I had great parents, I knew I was supposed to be appreciative. I feigned excitement. I said, “Thank you!” I played along, because that was the right thing to do.
When I look back on 2016, I can’t help but think it has felt a bit like getting underwear for Christmas. I had hope that it would be a great year. I had high expectations; I entered this year as bright-eyed and full of hope as a child on Christmas morning. Now that December is here, I’m slightly glad that it’s ending. It’s been the year of natural disasters, sleazy elections that felt like a reality show, creepy clowns, and scandal upon scandal. More than once this year, I’ve caught myself thinking, “Go home, 2016. You’re drunk!”
Personally, I’m surrounded by amazing people who love me, but that doesn’t change the fact that this has been a year of decline for my health. Medically speaking, I’ve felt like I was playing a one-sided game of “Twenty Questions”- a game where I kept asking questions but no one provided answers. I’ve sent e-mails, made calls, and raised questions to little (if any) avail. It has been the year of invisibility, and I don’t imagine anyone likes that feeling.
Like anyone that was raised well, I am saying, “Thank you.” I am not happy with all that’s happened. However, I am feigning excitement. I am hoping for the best. I am far from impressed with all that 2016 has handed me, but I am grateful for the good that has happened. I am choosing optimism despite the frustrations.
Therefore, despite all the heart breaking signs 2016 has shown me, I have so much hope for the coming year. In 2016, I had friends and family share social media posts about rare disease- even those who had previously seemed ambivalent to the cause. In 2016, I received more support from my chronic/rare disease online friends (who feel like family) that I ever expected. I have felt supported. I have felt encouraged. For the first time in my chronic illness life, I have felt like I am not fighting this battle alone- all because I have met so many chronic illness warriors who genuinely care. I have received hope and encouragement through the people at Global Genes that has encouraged me to believe that I am not fighting through this world alone- I have allies. There have been advancements for those with rare disease. There have been new and powerful voices speaking into the void.
Despite the disappointments of the past year, I have been encouraged to find that I am not alone. There are others who believe in peace, love, and health. There are those who will advocate for the disabled. I am encouraged to enter this next year, because in spite of the disappointments of 2016, I have come to believe in the amazing people of this world. Regardless of all that has happened, I believe in the kindness of those in my demographic. I acknowledge that there are those who believe in me and, ultimately, hope for my success. I put my faith in Global Genes and other organizations who believe that those who endure rare disease have worth.
I am entering 2017 with all the hope and expectation of a child on Christmas morning. Regardless of all the reasons 2016 has given me not to believe in the goodness of people, the actual humans I know have given me all the evidence I need to believe in kindness and goodness. So, 2017, if you don’t mind, don’t give me underwear. That’s, really, all I ask.
Peace, love, and health, my friends.
Oh! And, yeah, BYE FELICIA to 2016.
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.
Sign up for updates straight to your inbox.