Shhh… The Chronic Illness No One Talks About: Irritable Bowel Syndrome

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By Karen Lee Richards

As children, we were taught that it’s not polite to talk about bodily functions in public. After all, no one wants to hear about bowel movements at the dinner table. But have we carried politeness too far? When did having a little discretion turn into being embarrassed about a natural part of life?

I’m not sure why it’s so embarrassing to talk about elimination. It’s a normal physical process that is common to every living being––human and animal. But despite this commonality, I daresay almost everyone is uncomfortable discussing the subject. In fact, we’re so uncomfortable, sometimes we don’t even tell our doctor when we’re having problems. Have we become too “polite” to seek help when our digestive systems are not functioning properly?

Irritable Bowel Syndrome

One digestive disorder we need to start talking about more is irritable bowel syndrome (IBS). It’s estimated that IBS affects 10–15% of the general population.1 And when we look at chronic illnesses like fibromyalgia and ME/CFS, those percentages climb drastically. Up to 70% of people with fibromyalgia and a whopping 90% of people with ME/CFS also have IBS.2,3

According to the International Foundation for Functional Gastrointestinal Disorders, IBS affects between 25 and 45 million people in the United States alone.1 You would think that we’d hear more about an illness that affects so many people. But because it’s almost impossible to discuss IBS without using taboo words like “bowel,” “diarrhea” and “constipation,” we hear very little about it.

Frankly Speaking

I have to confess that until recently, I was just as reticent to talk about IBS as everyone else seems to be. What changed? Well, a few months ago I suddenly began experiencing major, uncontrollable diarrhea. This was new for me because for most of my life, I had lived with the opposite problem. At first I still didn’t want to tell anyone, but eventually things got to the point that I was afraid to leave my house for fear of having an embarrassing accident. Usually I only had a few seconds warning to get to a bathroom; sometimes there was no warning at all.

After a few weeks of this, I finally got up the courage to tell a close friend about it. Much to my surprise, she was not only understanding, but she shared that she had experienced similar incidents in the past. It was encouraging to talk to someone who understood what I was going through. Buoyed by this positive experience, I decided to also tell another close friend. Once again I was surprised to learn that she, too, had first-hand experience of what was happening to me.

That was a real turning point for me. I realized if I didn’t even know that two of my closest friends had gone through these difficult and embarrassing IBS-related situations, how many more people out there must be suffering in silence as well. It was so encouraging and helpful to be able to talk frankly with someone else and not feel uncomfortable or embarrassed.

Let’s Start Talking

I’m happy to say that ProHealth is not afraid to talk frankly about IBS. To that end, I’m excited to tell you about our new IBS Facebook page, IBS Twitter page and monthly IBS HealthWatch Newsletter. As always, we will bring you the latest news, research updates, treatment protocols, coping tips, personal stories and community support for IBS.

I hope you’ll join us and help us begin to shed some much-needed light on this life-altering illness. Let’s start talking!


Karen Lee Richards is ProHealth’s Editor-in-Chief, as well as being the Editor of both the IBS and Weight Loss HealthWatch newsletters. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) in 1997 and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE magazine. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, then worked for eight years as the Chronic Pain Health Guide for The HealthCentral Network before coming to ProHealth.

References:

1. “Facts About IBS.” International Foundation for Functional Gastrointestinal Disorders. 11/24/16.

2. Dorottya Nagy-Szakal, et al. “Fecal metagenomic profiles in subgroups of patients with myalgic encephalomyelitis/chronic fatigue syndrome.” Microbiome, 2017; 5 (1) DOI: 10.1186/s40168-017-0261-y

3. Ed Coghlan. “Irritable Bowel Syndrome and Fibromyalgia.” National Pain Report. 5/17/16.

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