6 ways to get involved in the IBD community: Advice from a fellow Crohn’s advocate

Social media often gets a bad rap. But, oftentimes in the advocacy and chronic illness space, it’s an incredible connector. A few years back over Facebook, I came to know Linde Parcelslinde Linde graduated from my high school and later moved to St. Louis. She currently resides in Atlanta, where she works for the CDC and does Policy work for the division of lab sciences.

We’re 11 years apart by age, but share many of the same experiences as women who battle Crohn’s disease. We’re both passionate about using our voice to show others they are not alone in their IBD journey. This week—Linde talks about the importance of standing tall, owning your illness and getting involved in your community to make a difference.

I was diagnosed with Crohn’s Disease at the age of six. Eighteen years ago, diagnosis was difficult for pediatric patients. After more than a year of tests and declining health, my family was given an answer and a lifelong commitment to caring for my Crohn’s Disease.

I’m 24 now. I just moved to a new city for my first full-time job. One of the first things I did when I moved was plug into the regional chapter of The Crohn’s and Colitis Foundation and see how I could get involved. Linde's story

I wasn’t always an advocate for Crohn’s and Colitis though. In fact, I never attended Camp Oasis because I wanted to go to “normal” camp where I wouldn’t be surrounded by reminders of my disease. I regret not experiencing Camp Oasis and making friends who “got me” when I was that age.

It took years to realize that sharing my story and spending time with people with inflammatory bowel disease (and their caregivers) could bring me so much peace, confidence, and ownership of every part of who I am, including how I was made.

Some people receive their diagnosis and jump into headfirst. They advocate fiercely for a cure any way they can. I’ve seen others resolve to live “normally” and spend many years outside of the IBD community, attempting to absorb the struggle and live their life without leaving a trace of disease.

With over 1.6 million people in the United States with IBD, and as one of the estimated 1 in 200 who have IBD, I would argue that with this diagnosis comes with a responsibility to advocate. For everyone with IBD, and selfishly for myself, I want better research. Better treatments. Better services. Better health.

And it’s not a lost cause.

Here are 6 things I’ve done to get involved that you can do too!

  1. Take Steps

These uplifting Crohn’s and Colitis Foundation charity walks happen throughout the year, all over the country. It’s a great way to rally your friends and family to take steps by your side to raise awareness and drive research.

2. Volunteer for fundraiser events through your regional Crohn’s and Colitis Foundation

I helped gather raffle baskets, advertise, and organize volunteers for the themed Trivia Night in St. Louis three years in a row with a great planning committee. I attended with my family and friends for the past three years!

3. Follow influencers on social media and leverage your own profiles to raise awareness!

Here are some of my favorite Instagram accounts to follow:

@CrohnsColitisFoundation (stay in the know)

@rockswithsass (crystals/mental wellness and proceeds go to The Foundation!)

@Natalieannhayden (of course!)–Thanks, Linde! 😉

@CrohnsCooking (recipes for IBD)

@ileostomy_crohn_princess (model and mom with an ileostomy)

4. You can be a listening ear or a venting pal –make your availability known if you’re comfortable with someone sharing your name with others who might want to talk. 

Some parents have referred me to their high school aged children with IBD or a friend of a friend. You can sit with someone during their Remicade treatment or Humira injection. A lot of college students and young professionals may not have family in town and it’s more tolerable with company. Try to be vulnerable. I openly talk about the realities of office life, dating, and farting, (yes, I just said all three of those things in one sentence).

5. Team Challenge! 

linde runI’m training for a half marathon and taking on the biggest fitness and fundraising goal of my life! I run every Saturday with Team Challenge ATL, they are the best!

You don’t have to raise thousands of dollars for research or share your most traumatic digestive adventure on social media…but for the sake of this community and for yourself, please own it. Own your patient journey in a way that furthers science and connects people. Because as much as I want to be your Crohn’s friend, I’d rather just be your friend 10 years from now.

You can connect with Linde on Instagram here: @thelindecity.

Linde is running the 2018 Savannah Rock N’ Roll Half Marathon November 3, for the Crohn’s and Colitis Foundation. She’s looking to raise $2,800. Click here to help her reach her goal!

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