The Accidental Advocate
By Jessica L.
Moved to tears by the plight of others, I’ve often felt frustrated that my hand of cards has quite often been… well…lucky. And it sure seems like so many others have for no reason, been dealt a much more difficult hand of cards again and again. For me, I’m referring to the privilege of education, a safe neighborhood, a stable country, parents who cared, and a good bill of health… As a sister, daughter, and niece of individuals with Irritable Bowel Syndrome (IBS) or motility disorders, I know peripherally how hard some people struggle every day just to function pain-free (or pain-dull-enough) in situations that I have largely taken for granted.
Last fall I combined a personal goal of running my first marathon, with the drive to raise awareness and financial support for people suffering from IBS and motility Disorders. As such, I fell into the role of an accidental advocate, and I had no idea when I first contemplated the idea, of the power of such a thing.
When I was younger, I always knew my mother had a “sensitive stomach” and my brother too. For both of them, it was exacerbated by stress. And the two of them seemed linked, as quite often they were both sick at the same time. Sometimes I was embarrassed that when we would go out in public, my mom always ordered her food with “oil on the side” and she asked the waiters how everything was prepared. I then hated that we would be late to catch a movie because she would stop in the bathroom along the way. Almost every meal my brother ate would give him some stomach trouble or pain of some sort.
As I started to look more into IBS and other GI disorders, I was shocked and saddened at the large number of people I read about who suffer from these conditions, and the spectrum of symptoms people experience on a regular basis was quite wide. At their best, IBS sufferers in my family try to plan a bathroom stop between dinner and the movie on a Saturday night—or maintain a mental list of restaurants they can eat without TOO much pain after the fact. At their best, they rent an extra car during my college graduation so that when we are done with dinner and one parent drives me to the ceremony for commencement, the other takes the car to stop back at the hotel along the way. At their worst, they miss out on eating Christmas dinner, trips to Paris, or lose dangerous amounts of weight leading to life-threatening conditions. I do not presume to have covered all the symptoms here, just some I have observed.
Looking at my family then, I often ask myself two questions: Why them? When is my onset? I wonder if there is a hereditary link. Scientists currently know that genetics can be one of many factors in IBS for some families, but exactly how, we may never know.
Illnesses like IBS affect a whole lot more of us than we think—many don’t talk about it, many don’t ask for help, and many suffer silently. While I realize I’m not affected, and therefore can’t pretend to understand any embarrassment from talking about such a cause, I know such things are taboo for some reason. That all said, I remain troubled that those affected with IBS, despite the extreme discomfort and inconvenience, and despite the pressing need to raise awareness amongst the public, the medical community, and the legislators, those affected (at least in my immediate family) still choose to remain silent (and also avoid further investigation by doctors) because of the societal taboos of the GI tract.
Today, IBS catches my family members off-guard and my brother is in pain with most things he eats. He’s been to a general practitioner who advised him to see a specialist because they could not diagnose it, but he hasn’t gone, and this was two years ago. His symptoms certainly aren’t getting better, but he’s afraid of the invasive testing and likely lack of a diagnosis or “cure.” My mother has stopped going to a doctor with reference to this because she’s pretty sure there’s nothing that can be done. She’s also not even willing to look online for possible relief from symptoms or, at minimum, solidarity from others in the IBS community experiencing similar things. I can’t express the frustration and helplessness this makes me feel—both that I cannot help them, but also that they will not attempt to help themselves.
Is my role to begin to change this? I don’t know.
The Accidental Advocate
But I can try. And so can you. The sadness of seeing loved ones suffer has inspired my new role as an accidental advocate of this cause and I write this to reach out to you—whether you are personally affected, or whether you are a loved one of someone with IBS. I share my story in hopes that you can find some way that is right for you to stand up and make your impact
I have been a runner most of my life. A marathon had been a personal goal for 10 years and I mostly thought I could never do it. Not that I couldn’t finish 26.2 miles. I have pushed my body hard in a lot of scenarios and know that I could finish–even if crawling. But what I didn’t think I could do was train on my own, miles in the rain, prevent injury, and maintain my health, while working three jobs.
So… selfishly, I knew I needed a cause to keep me accountable. After some of my research, and one heartbreaking visit to an affected family member, I decided to raise money for the International Foundation for Functional Gastrointestinal Disorders under the umbrella of a new advocacy organization started by a close friend, called Race 4 Awareness.
What started off as a shameless email solicitation to my close family and friends for a few bucks turned into a new community of friends and supporters I didn’t even know I had—and we were somehow all connected through this cause. Friends, family, and friends of family followed the training on my blog, offered up their own words of support, and donated nearly $3000 in support of my run, which in turn, went toward research for the IFFGD. Now the training runs were more fun, I could run to music recommended by my followers, think of the notes they wrote me, think of those in particular who shared their personal stories with me, and this gave me the extra kicks of energy I needed to make it through the tougher parts of the training and the race day. In the actual 26.2, I ran taller and stronger, and smiled almost the whole way, knowing I was running for something just a little bit larger than the finish line, a little bit larger than the four hours and twenty-four minutes of that day.
One of my family members was quite involved, and two remain somewhat passive—it still makes me sad–but where they aren’t motivated or inspired to take a step forward, I gather from notes, letters, and postings to my website, that others, even strangers, are motivated—and this makes me glad. We are all in this community—some on a different level than others—and together there’s chance to raise awareness, provide support, and offer relief for conditions like IBS.
The Call to Action
So… If you have friends or family, or friends of family suffering from IBS, please raise your voice, raise a glass with friends to discuss the issues, raise donations, and raise awareness for these complex and painful conditions which are out there. If you similarly feel frustrated you can’t alleviate a loved one’s suffering, this is one thing you can do. There are people who appreciate you more than you know—and your efforts, no matter how small or large, will not go unnoticed—in fact, I guarantee they will inspire more than you would ever imagine. And who knows, you may even surprise yourself with what you’re capable of doing.
Posted 2016; last reviewed March 2023