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My Life with Ehlers-Danlos: A Thank You to Social Media Friends

April 13, 2017

By Tiffany Early

The trees outside my window are blooming. My house feels humid, and I’ve sneezed half a dozen times while trying to type these first few sentences. Spring is here, friends. Allergies aside, I’m grateful for spring. I’ve said this here before, but I’m always thankful for new beginnings. The new life in the trees and flowers makes me feel hopeful for the coming months- at a time when a little hope is needed.

Winter has been rough for me. My joint pain has reached new levels. I’ve woke up crying in pain several times in the past few weeks. Doctor visits have been disappointing. And, while I have a wonderful support system, they have been stretched by their own personal medical situations and family concerns. It has hardly seemed like the time to burden them with my daily crises. Winter was a hard series of months for me.

At the end (I hope) of this gloomy weather, I look back and wonder how I stayed afloat, and I realize that it was the people of social media that bolstered me. Again, my family, friends, and spouse are all wonderful, but sometimes you need people who understand what it feels like to be sick- all day, every day. Fortunately, I live in a time where understanding people are a couple clicks away. I’ve reached out for help through social media and been met with support, advice, prayers, and kindness. Now, I’m not suggesting that social media groups should take the place of a physical support system, but I am suggesting that they are a great support system in and of themselves.

One of the best decisions I made after I became I ill was to begin blogging my journey. Having my story available to hundreds of other rare disease sufferers, has opened a whole new world of empathizers. While I can truly say that I have achieved no notoriety due to blogging, I have received so much more. I’ve received friends who check on me if they don’t see me post on social media for a few days. I’ve met prayer warriors from a variety of faiths who are willing to intercede on my behalf. Most importantly, I’ve met others who are struggling that I can support and encourage.

So, as winter is finally closing and spring is being ushered in in a flurry of pollen and other allergens, I want to sincerely thank all those who support others through social media groups. Whether you share a story to spread awareness, offer kindness in a chronic illness group, or simply strive to keep your social media positive, you are appreciated. And, while all that seems rather small and inconsequential, please know that you’re making a difference over here in my little corner of the world.

Peace, love, and health.

 

ABOUT TIFFANY EARLY

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.

Facebook– Facebook Support Group Instagram-| @crazychronictiff

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