The #IBelieveinyourStory Campaign 2019

In about 5 weeks, it will be IBS awareness month, April 2019.  I am hopeful that together we can bring greater awareness of IBS, share our stories, raise needed money for research…and make a difference.  Will you get loud with me in April?

I have been thinking a lot about my dad recently.  My dad, Hans, was a German immigrant arriving in America at a very young age.  He was slated to go to trade school in Boston, but his teachers could see he was a very bright young man. One of his teachers traveled to the suburbs of Dedham, Massachusetts to speak with my dad’s parents about his academic abilities. The story goes that this young teacher told my grandfather that my Dad should apply to college and forgo the trade school route.

My grandparents heeded the teacher’s advice and my dad finished #1 in his engineering class at Tuft’s University in Boston. My dad died the year I was in my dietetic internship. He was proud of my academic accomplishments, which, of course, always made me very proud. My daughter, Chelsea wore his college ring in Greece at her wedding, as her ‘something blue’.

A fitting way to remember my Dad during a very special occasion.

My dad had this incredible ethical barometer. He walked the talk in many ways showing his 9 kids, what was right and what was wrong. He treated everyone he met with the utmost respect. He advocated for “more” in many ways. He was not only the chairman of the school committee in my home town pushing for better education, he was also voted in as a selectman and volunteered in the town’s finance committee too.  He kept his loving emotions close to his chest when it came to his kids. He truly had a difficult time sharing his feelings. But, I do remember when I was about 12 years old, when I messed up in a swim meet, he was there for me. As part of a relay team, I didn’t jump in the water as fast enough as I could have and my team lost the race. Like my dad, I can be a bit of a perfectionist. I was so devastated that I let my team down. I recall how he held me so tight on our living room couch while I weeped. He got me at that moment. And I can remember the feeling of his arm around my shoulder. A feeling of being safe and secure.  He shared a little tender side with me in that moment, a side that he typically could not.

So, how does this all tie into the IBelieveinyourStory campaign.  My dad was an advocate. In all walks of life–he would speak up. Show up. And not only try to make a difference…but actually make a difference.

When I was at that beautiful defiant age of 16 I worked at a local pharmacy.  It was during a time in the US, when Tylenol bottles were being tainted with cyanide. Awful. Scary. All Tylenol bottles were recalled from the store shelves.  My dad walked into the pharmacy I was working at and found Tylenol bottles still on the shelf.  He went straight to the owners and gruffly said, “get these bottles off the shelves now!”  In my 16 year old mind, I remember being completely embarrassed and a bit horrified that my Dad would speak to my boss that way. And yet, he was SO right.

I think we all need to speak up more for what is wrong and advocate for what is right.

My Dad would be proud of my efforts to try to change the future of IBS.  He probably would keep those feelings close to his vest though. But somehow, I think I would know. 🙂

I married a man with similar values to my Dad.  I guess that happens sometimes. My husband, Russ, lives by the words, ‘do what’s right’.  Like my dad my husband is a perfectionist and keeps things pretty close to the vest.  So these two men have influenced me quite a great deal. And I often play back the words, “Do what’s right” in my head when faced with a difficult decision.  What is funny about my Dad and my husband is they both share a very silly side. My dad had about 12 names for farts that he would share with us, in private, of course. 🙂

So…here is the deal. 1 billion people are impacted with IBS globally.  In one survey study, individuals with IBS would be willing to give up 1/4 of their remaining life for a treatment that offers symptom relief.  Research funding is poor. Current treatments are marginal at best. I am grateful for the researchers making a difference in IBS.  Gut microbiome directed therapies are emerging. The low FODMAP diet is helping people gain back their lives (I am so grateful) but does not offer a cure. We need to do better and learn so much more.

Truthfully, I need all of you to have a voice in April (and always, really) as we work together to raise awareness of IBS and SIBO, together. Whether you have experienced the pain of IBS or SIBO or not, I can tell you, you have a friend, neighbor, patient or partner that has…many suffer is silence. 

It takes guts to talk about your guts. I get it. The good news…you are not alone.

How can you help?  I ask that you take part in the #IBelieveinyourStory campaign.  You can do this in many difference ways.

  • Share the hashtag #IBelieveinyourStory on social media posts related to IBS, inspirational quotes, or other positive messages to those with IBS.
  • Donate to research.
  • Keep an eye on my shop, I will be selling #IBelieveinyourStory swag with a percentage going toward research.
  • Share your IBS or SIBO story.  You may find opening up about your experience is healing for you…and also for countless others that read it. You can put a face behind the 1 in 7 that has IBS. Learn how to share you story, here.

Additional events coming up for this year’s IBelieveinyourStory campaign:

We have a charity ride at B/Spoke Studios in Wellesley, MA on 4/20/19 at 12:30, learn more and sign up here.

We are ALSO working with a few restaurants in the Boston and Atlanta area to offer FODMAP modified main dishes at their restaurants on April 5 and 6, 2019! Ming Tsia, at Blue Dragon is on board, and will offer 2 low FODMAP dishes on April 5/6. I am going on Friday, April 5–can’t wait! More to come on this restaurant initiative soon!

Oh…and PLEASE…Share either or both images below on your social media feeds (Facebook, Instagram or Twitter) on April 1, 2019! Simply click on picture(s) to save or drag onto your computer desktop! Place image on your feed or use as your profile picture. You can link to the IBelieveinyourStory about page if you want, using this link.   

Be who you NEEDED when you were felt down, alone, sad, angry or maybe even ashamed or embarrassed. Chronic digestive health conditions can make you feel all the feels.

And on a final note, please share and watch the #IBelieveinyourStory video.  And, you can read about my personal story too.  Unlike my Dad, I wear my heart on my sleeve. I have no problem showing you my all. It’s not always pretty. But, it’s me.

IBS may at times be associated with silence, shame, sadness, sickness and solitude…but we, together can change this.

I am looking forward to shouting off the roof tops with you all…

Together, we can will change the future of IBS.

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