Explaining the Invisible Battle: How to Talk About IBD with Your Co-Workers, Friends, & Family
I don’t need to tell you that navigating life with IBD can be challenging, and one the most difficult aspects is explaining what you’re going through to friends, family, coworkers, and acquaintances who may have never heard of IBD (or maybe only heard of it from an annoying commercial jingle).
When you're in conversation and drop the term "Crohn's Disease" or "Ulcerative Colitis," only to be met with blank stares, it can be a bit overwhelming. You already deal with so much. Adding on explaining what IBD is should not be the stressor that sends you into a flare-up.
So, how do you explain what IBD is and what it means in your life?
Let's dive into it.
Understanding What You’ve Got
In the past, explaining IBD used to be an uphill battle because no one had any clue what it entailed. But in recent years, thanks to commercial jingles and awareness campaigns, some have heard about it, though they might not grasp how it impacts your life. With half-truths and misinformation clouding the way, you’re probably confused about what exactly IBD is too-- especially knowing that the chances of your doctor taking the time to talk to you about the in’s and out’s of IBD exceedingly rare.
Before we delve into explaining IBD to the important people in our lives, it's crucial for us to recognize that the definition of IBD has evolved a great deal lately and it will continue to evolve over time as scientists continue to look for a true cause and a lasting cure.
IBD is a complex condition, especially because the way it shows up for me and the way it shows up for you, may be completely different.
So, what is IBD in simple terms?
The Evolving Cause of IBD
Inflammatory Bowel Disease is often misunderstood. Previously, it was labeled an autoimmune disease, like Multiple Sclerosis (M.S.) or Lupus, and many doctors are still labeling it this way, but that's not the full picture of what IBD is caused by. It can take 18-20 years for scientific studies to impact the way your doctor practices medicine—yep, that long!
But thanks to our ability to access the latest research data bases, we don’t have to wait to get empowered and knowledgeable about IBD in our own lives. In fact, I think it’s imperative that we all have a basic understanding of what’s going on in our body when IBD is at play.
Without an understanding of the full picture, how can we effectively tell others what’s going on with us and advocate for ourselves at the doctor’s office?
Recently, the prevailing theory about the cause of Crohn’s and colitis has begun to move away from the “autoimmunity” theory in favor of the idea that IBD is an “immune-mediated” disease.
Great, but what the heck does that mean and what’s the difference?
Immune-mediated means that while it’s still believed that the immune system plays a strong role in the development and continuation of the disease, the primary cause of the immune response and the subsequent inflammation in the gut starts not with the body attacking itself, but rather with a bacterial imbalance in the gut.
In other words, once the bacteria in the gut is unstable, the immune system then struggles to combat these imbalances effectively, which results in digestive imbalances and systemic challenges that have the ability to move beyond the G.I. tract. Skin changes, gallbladder and kidney issues, eye inflammation, joint pain, arthritis, even neurological changes have all been noted when IBD is at play.
The good news about these recent findings is that it’s changing the way IBD is treated and giving more attention to our illness that desperately needs a major breakthrough.
Scientific studies have revealed significant differences in the gut microbiomes of those with and without IBD. Those with IBD tend to have less diversity in their gut bacteria, often with an abundance of pro-inflammatory strains.
Adding anti-inflammatory bacteria to the digestive system is believed to be beneficial for managing Crohn's and colitis. Two specific anti-inflammatory bacterial strains that are currently in the early stages of study are Faecalibacterium prausnitzii (try saying that one 3 times fast ; ) and Akkermansia muciniphila. Each have shown promise in their own right. These strains have the power to create a healthy gut barrier and mucosal lining, help with short chain fatty acid production to aid in boosting immune function as well as decreasing inflammation. Plus, they also have the ability to play a significant role in growing healthy intestinal cell tissue.
Sounds amazing, right?
With all good news, of course there’s caution. It’s important to note that when scientists study the G.I. tracts of those with IBD, they do not see one single bacterial profile that fits all patients. This is why there will probably never be a one size fits all approach to healing from digestive disorders.
Everyone's situation is unique but finding the right combination of probiotic strains to add to your already established treatment plan-- now that’s something to plan for in 2024 for sure!
Explaining IBD on Your Own Terms
The challenge for you, now that you know the latest regarding where the science is stacking up on IBD, is how to translate this complex information into a concise elevator speech for friends, family, or coworkers.
When I have the opportunity to address a new person who is unclear about what IBD is and how it impacts me, I have a pretty standard elevator speech I give:
"IBD is a chronic medical condition where my immune system and gut are out of balance. This imbalance can lead to inflammation and pain throughout my body. There isn't a single cause or cure for IBD because it varies from person to person. My healing process involves combining various healing pillars, which I call my 'Wheel of Wellness.'"
If this explanation feels right for you, free to steal my speech, tweak it and make it your own.
You never know when the “What’s IBD?” question is going to come up so I find it helpful to have something in my back pocket. That way, I don’t get nervous or flustered when I’m asked to talk about what I go through with IBD.
I see it as my privilege and my mission in life to spread the word about what Inflammatory Bowel Disease is and what it isn’t. The more people who understand and care about what we go through, the more money that goes into funding research. And as my very first IBD doc told me when I was in my late teens, “We don’t have a cure yet, we don’t really even know a lot about what causes this. But I’m willing to bet that in your lifetime, we will.”
From his lips to God’s ears.
Every day since then, I’ve hung on to that hope and with the groundbreaking new research that’s evolving every day, I am still hopeful we’ll get there.
One Thing’s for Certain, We Won’t Heal IBD with One Magic Pill (or Food)
One key takeaway I want to make sure you leave this article with is the understanding that living flare free with IBD is rarely just about one method or one treatment. I can count on one hand the number of people I’ve met with UC who changed just one thing and never looked back. And, for sure, I don’t know anyone with Crohn’s in this boat.
Managing IBD often takes a village.
It’s a multi-disciplinary approach that brings you the long-term success you’re hoping to achieve. Sure, maybe a pill can quell your symptoms for a few months or even a year, maybe changing your diet only will work for a year or two, but trust me, these “do only one thing” plans don’t last.
I learned this IBD-sized lesson the hard way.
Since IBD manifests differently in each person, and since there’s more than one root cause for this illness, a one-size-fits-all treatment plan doesn't exist. This is where a holistic, root cause perspective comes into play. Functional and integrative IBD practitioners stress the importance of addressing the root of your IBD and exploring various avenues for long-term remission. A comprehensive approach considers many key healing modalities.
After 14 years of working with clients in my coaching practice, I’ve developed a multi-disciplinary healing plan that takes into account all areas that have the potential to impact your health. It’s called The F.L.U.S.H. Formula Framework and it includes the key healing and remission maintaining areas of: Food, Lifestyle, Unconventional Treatments, Supplements, and Higher Mindset. When each of these areas are addressed, your chances of finding long-term flare free living increase.
When You Empower Yourself, You Empower Others
On your journey with IBD, it's essential to empower yourself with knowledge about your condition. Understanding the basics of IBD and being able to explain it in simple terms can foster more open and honest conversations with friends, family, and coworkers.
Remember, you are not alone in this battle. Many others are navigating the complexities of IBD, and together, we can share our experiences and insights to support one another. It's a journey that involves taking small, manageable steps toward healing while facing the demands of our mom life with IBD.
Your Next Best Steps
If you’re ready to delve deeper into this idea of what immune-modulated IBD is all about and you’re ready to explore a multi-faceted approach to healing, be sure to grab my free resource: "Immune-Mediated IBD & A Pillared Approach to Healing." You can find the link for that resource, just below this article.
Above all, remember that talking about IBD doesn't have to be daunting. By understanding your condition and effectively conveying what you’re going through to others, you can build a support network that aids you on your journey toward being the mom, co-worker, friend, and family member you always knew you could be.