The burden of IBS: exploring the mental struggles of a common condition

April, one of my favorite months of the year.

The sun coming out of its long hibernation period in the Northern hemisphere, the yet unpredictable weather, the daffodils, the blooming trees, the abundance of days off, unfolding my hammock on my rooftop, the first hay fever sneezing and sniffling… April, the month where everything seems to come back to life with the promise of spring.

April is also IBS Awareness Month, which will be the topic of this blog post today.

Wait! Before you explain us what this word “IBS” refers to – a rooftop? I always thought that both the salaries in academia and as an amateur blogger were pretty low (or nonexistent, for the latter).

You guessed correctly; I still live in a Polly Pocket house, but my Polly Pocket house has a roof. I call a roof with a hammock a “rooftop”, even though the best view I have on this rooftop is on the solar panels of my direct neighbor.

Note: for Gen Z readers and younger, I anticipate the following train of thoughts in your mind: Polly Pocket –> wtf? –> chat/ –> “oh, the mini dollhouses that came in small compact cases and that every Millennial wanted to have, back in the days!”.

I thought we were about to talk about IBS in this blog post, not Polly Pocket houses.

Sorry – got lost having a great conversation with chatGPT again.

The abbreviation “IBS” stands for Irritable Bowel Syndrome, a chronic gastrointestinal condition that causes regular and recurrent attacks of abdominal pain and/or discomfort, together with altered bowel habits.

IBS is certainly not a new topic on the blog – if you have followed the blog since its inception, in 2018, you may recall the post titled FODMAP and Irritable Bowel Syndrome – is “healthy food” really healthy for everyone?, where we discussed the influence that food can have – especially stuff labelled “healthy” by our society – on the symptoms of IBS patients. In that post, we covered the definition and characteristics of IBS, as well as the (negative) consequences of IBS on the quality of (my) life.

Why again a post on IBS, then, if this has been already covered on the blog? I mean, it is not like you have been blogging for 10 years and you have hundreds of posts on the clock…

IBS is indeed a topic very close to my heart, as I have been an IBS patient for more than 20 years. But this is not the reason I want to write another blog post on it. The major reason is that IBS is a quite common condition, affecting up to 10-15% of individuals worldwide, but not really known by the general population or – even worse! – by individuals suffering from symptoms without knowing they actually have IBS. As an IBS patient, scientist and amateur blogger, IBS Awareness Month is therefore a golden opportunity to raise awareness on this condition – again.

This time, though, I have chosen not to focus on the physical aspects of the syndrome (abdominal pain, bloating, flatulence, diarrhea and/or constipation to name a few), but take another route and discuss the toll that IBS can take on mental health. IBS is not life-threatening, but living with this condition can be very challenging and frustrating, and this is something maybe not that easy to understand for people who are not suffering from it.

Okay, let’s focus on the mental aspects of IBS here. Did you notice any evolution in your condition since the first IBS post in 2018?

This is an interesting question, as something major happened between 2018 and 2023 – yes, of course you all know what I am talking about, except if you are reading this post in 2078 and you forgot: the SARS-CoV-2 pandemic.

The extra thinking time I got during this pandemic and multiple lockdowns made me realize that the physical aspect of my IBS was somewhat stable (bad, but stable), but that the mental struggles associated with the disease were getting stronger, more present, and also becoming more difficult to manage.

But what kind of mental struggles can a lambda person from the general population picture when it comes to IBS?

**Mode full transparency and vulnerability on**

Disclaimer: this paragraph was written during one of the flare-ups.

I feel hopeless about my situation. There is no cure, there is nothing that brings a sustainable solution to the symptoms I have. I can have the best lifestyle ever and be as careful as I can with food, I can work out regularly and sleep 9h per night, I will still end up in my bed with an unexplainable pain. I will still feel like a truck rolled over me 20 times after a not-that-heavy lunch outside. I will still feel like 6-month pregnant after a dinner at a restaurant. I will still spend nights sitting in my bed after a fabulous evening outside – not being able to sleep because of being too uncomfortable. I will still have anxiety whenever I need to have any type of food outside my house that I cannot prepare myself. I will still worry that I get a flare-up during an important event in my life and that I cannot perform as well as I wish. I will still think that IBS will at some point win and force me to be less ambitious in my life and career. I will still have the feeling when I go out with my friends that I am always the annoying person when it comes to food. I will still panic when going to restaurants with a surprise menu where I don’t know what the ingredients are. I will still always check – wherever I go – where the closest toilets are. I will still adapt my food habits ahead of a concert or a festival to avoid having diarrhea on that day. I will still hate myself after pushing my boundaries too far – knowing I will have to pay for it the days or even weeks after, even though my boundaries are so low that I feel like pushing them whatever I do. I will still be extremely anxious while waiting for the results of my tests, would that be for those related to the gastrointestinal tube itself or all other weird and unexplained symptoms I have. I will still feel very guilty for every last-minute cancellation I have to do with social events, because it is just beyond my physical and mental capacities to join. I will still spend too much time thinking about what to eat and what not during my day. I will still be jealous of all these people who can eat without any issues, and who actually enjoy eating. I will still try to keep my smile, my drive and my passion – even if I didn’t sleep because of the pain, I’m exhausted, drained, and feel like dying from the inside.

**Mode full transparency and vulnerability off**

Wow. That is heavy. But do some of these mental aspects of IBS also have an influence on your work?  

Yes, definitely, and this is also an important aspect that I would like to bring more awareness onto.

In my work, it is common to go to symposia (usually a 1-day meeting, with lunch included) or to conferences (a meeting taking place over several days, involving lunches, dinners and sleep overs in hotels). Even though I am usually very excited to meet again my scientific friends and spend great times exchanging about science, I also get an extra load of anxiety – will I be able to eat what is provided for lunch? How can I tell my collaborators in an elegant way that I cannot join them at this superawesome restaurant they booked for us, because there will be absolutely nothing that I can eat? How will I escape on some nights to have a light dinner in my hotel room or outside in a park, so that I manage to survive the entire week and don’t collapse before the end of the conference?

We have the chance to travel abroad for these conferences, which is fantastic. The only thing is that I probably need three additional hours of preparation for an intercontinental trip – not because I can’t decide which pairs of shoes I need to take with me, but because I need to prepare all the food I will take with me on board to be sure there is something I can actually eat during my flight.

This constant pressure and worry can be mentally exhausting, sometimes resulting in days where I am just burned after work and can’t do nothing except wall-watching and go to sleep. And yet, I still function, I still deliver, I still laugh, I still stand in front of dozens of students to give my lectures, I still try to entertain my audience while giving a presentation, because well-it-is-not-easy-but-c’mon-it-could-be-way-worse.

If it could be worse, what do you actually expect by sharing your story and your mental struggles in such a transparent way, Dr. Iza?

Besides more money put into research on IBS and other gastrointestinal conditions, as well as more commitment from pharma companies to come up with a drug that can actually help IBS patients, I have different wishes, which all converge towards more equity and inclusion of people suffering from a debilitating condition in the society – IBS or something else.

I’d like anyone reading these lines to pause for a second and think about the fact that many of their work colleagues probably face some kind of physical or mental challenges. It is not because you don’t see it that it does not exist. What you see may barely be the tip of the iceberg. Don’t judge. Don’t assume. Don’t draw conclusions. Be empathetic. Ask how they are doing. Listen to their answer. Ask what they need to function on the work floor. Respect their needs, even if they feel somewhat irrelevant to you. Don’t try to fix them; embrace who they are. They are already busy enough trying to fix themselves.

Do you have a chronic condition that can have an influence your work and your performance? I feel for you; I’m sorry to hear you have to go through those sh*tty moments. Are you comfortable sharing this with your colleagues? I love the idea for you to show your vulnerabilities. Be as transparent as possible with your colleagues. Tell them what you need. Guide them through your journey, to educate them and make them feel engaged and connected.

On a similar trend, I wish we would focus more on prioritizing physical and mental health at work. I have seen too many brilliant scientists working hard to save the world and discover new therapies, drug targets or new diagnostic tools – while having an awful lifestyle that will make them crash at some point. I don’t see the point of glorifying overwork as it is done, in my opinion, in today’s society. Overwork is not inclusive; overwork is fostering the human profiles who have a strong health, while keeping at bay other talented people. Those people are often committed to work as hard as their peers, but have to be more careful with their health and should not be punished for that. So do me a favor and make sure we try our best to act as role models for the younger generations – with a healthy combination of passion, drive, commitment, hard work, joy, sleep, sport, social connections, me-time, and anything that is relevant to anyone when it comes to mental and physical health.

After 20 years of marriage with IBS, did you also develop some kind of love-and-hate relationship with it? Did you manage to find some silver lining during this journey?

It took some time, but I think I did. I started back in the days by giving a name to my gastrointestinal tube (hi, Maurice!) – if I have to spend my entire life with this thing, better give it a name and try to accept it as much as I can. I do have to apologize to all folks named Maurice here, who won’t take it as a compliment that in my mind, they are associated with pain and poop.

Maurice brought me a sense of urgency for prioritizing both my physical and mental health over anything else. This became even stronger during the pandemic, where I could witness how great I felt when I made my health a priority. Maurice made me also realize how lucky I am to be surrounded by my amazing friends and family, who bring joy, infinite support and understanding through all kinds of weather (including when unpredictable in April). Maurice also taught me to better express my needs on the working floor, to allow me to find a construction that works best for me.

It is still a long journey, though; I keep crashing regularly physically and then mentally because I too often do not listen to the signals my body is giving me when I reach my limits. I’m still actively searching for the best balance between #YOLO and #YILTYM (Yes I Listen To You Maurice), but I guess it is what we call life.

But why, WHY did you choose Maurice as a name?

I think I already shared a lot of secrets in this post, so I will keep this one for the next time 🙂

Until next time!

Dr. Iza

PS: ChatGPT does not have IBS, so it told me I should better let my emotions speak and write this blog post myself.

PPS: Except for the title, because I’m very bad at titles.

Image source: Media toolkit for IBS Awareness Month from the International Foundation for Gastrointestinal Disorders (IFFGD)