Tag: make a difference

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

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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 Parcels. linde 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!

Finding strength through your IBD tribe

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Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. IMG_1076The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do?  I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.IMG_1077

Six month after diagnosis, I came home from college for winter break.  Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. IMG_1078Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!”  “Someone always has it worse!”  “Suck it up butter cup”.  “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me!  I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. kelliI’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!!  Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you!  Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.