My Life with Ehlers-Danlos: How Can You Be a Champion?
January 9, 2017
Welcome to 2017, friends! I’m grateful for new beginnings- even if it only means I have to remember to write a new number when I write the date. I am declaring this year a “Year of Champions” for myself. I am committed to looking for champions around me every day. I want to be aware of the people in my life that offer hope and encouragement to those who feel as though there’s no one left to fight for them.
I also want to commit to being a champion for myself and others. While I’ve spent the years since I became ill trying to be a voice and an advocate for those who are disabled, I’m aware that there’s more than I can do. I hope that my rare disease friends will join me in committing to being a champion for those in our community. I’ve spent the closing weeks of 2016 thinking about how I can be a person who inspires hope for chronic/ rare disease patients around the world. I don’t believe this is an exhaustive list, but it’s a start. I would love to hear more ideas of ways we can all be champions for those in our community.
- I can donate to organizations that help rare disease patients. Every year I hope to do a fundraiser for one of the research organizations that offers hope to patients through medical research. I want to do it, but I make a thousand excuses about my own struggling finances that keep me from actually moving forward. This year, I will organize some sort of fundraiser for a patient organization (ie. Global Genes.) It might be small scale, but I will find a way to donate to the organization(s) that bring hope to patients like me.
- I can volunteer to spread awareness. In the coming year, I want to take opportunities to spread the message that invisible disabilities are just as real as any other. I’ve considered offering to speak to elementary classrooms about visible and invisible disabilities. Maybe I’ll just continue to use my voice as a blogger to spread this message. I don’t have an exact plan, but I know it’s important to me that I do this.
- I can speak up. In the past couple months, I’ve felt discouraged by the hateful things I’ve heard others say about my friends with disabilities. The judgment and general disregard others have shown to those with daily health struggles is heart breaking. This year, I’m getting bolder. I will speak up and advocate for my friends and chronic illness family. I’m not an angry person. I’m not even a confrontational person. However, I will be a voice and an advocate when I see or hear someone being treated poorly because of their differences.
- I can look for allies. I’m going to be looking for all of you to join me. I get it. Every person can’t organize a fundraiser. Every person can’t volunteer for clinical research or send letters to politicians. However, each of us has the power to hope for a better tomorrow and take steps toward that future. We can hold each other up when we’re feeling low. We can have each other’s backs when one of us gets too tired to fight. I’m looking for others to commit to being a champion for our community, and I believe I’ll find you. You’ll be in our online forums. You’ll be at the doctor’s office. You’ll be at support group meetings.
I’m sure it sounds cliché to say that we’re going to be “champions” this year. However, this life of always being sick has taught much more about my strength than my obvious weaknesses. If anyone can band together for positive change, it’s us. Let’s make this the best year yet!
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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