I find myself sitting outside the gastroenterologist’s office every couple of months. It’s either that or outside the ultrasound scan area with a lot of pregnant people as we all chug water, waiting to be called in and have our bladders deemed worthy of scanning.
The first time that I was diagnosed by a specialist, I had taken with me months of test results and health records, and given him a thorough run down of what I was going through plus observations from my GP. There was a physical file and a Google Doc and everything. The doctor took less than two minutes to browse through the scans.
Looking annoyed, he stated that I had Irritable Bowel Syndrome and why was I taking things so seriously anyway!
I sat there for a good minute, stunned and feeling dismissed. Here was someone telling me that the reason for all this trouble, the suffering I’d gone through for months on end, was me. All of the pills I’d been taking were useless because of my inability to take that final boss of medications - the chill pill.
And now here I am again, bloated, nauseous, and ready to be told to keep taking my medications and try meditation (I have been doing both for three years now). I am worried that I will throw up in the middle of this waiting room. I call a friend to distract myself and cry a little near the hospital water cooler.
Irritable Bowel Syndrome or IBS is a chronic illness that affects digestive functions and is exacerbated by stress and anxiety. When I am in the middle of a flare-up, I experience a multitude of symptoms with varying intensities such as erratic and painful bowel movements, acid reflux, abdominal pain, nausea, and a lot of discomfort. The very unpredictable nature of IBS makes it hard to prepare for. ‘trigger foods they are called. One day, you’re fine and the next, you’re in bed, trying to do the mental gymnastics of what brought on this flare-up.
IBS also brings with it a lot of shame because it is associated with bodily functions that are usually considered ‘gross’ This shame can become its own vicious cycle that makes a flare-up worse. When I have to deal with my symptoms, I find myself thinking that my body is the enemy. How do you reconcile with a body that does not behave the way you want it to? How do you feel desirable and attractive in it?
Some people might wonder ‘Why do you need to feel desirable when you’re sick? Isn’t that vain’?
Yes, I am vain but also, the question of ‘when I’m sick’ is a tricky one because being unwell is sometimes a huge slice in the pie chart of my time. Like many other humans, I want to feel confident and desired but desire is hard to feel and reciprocate when a good part of my energy is spent either handling the symptoms or worrying about when they’ll show up next. It’s not like IBS brought forth insecurities in a vacuum. It simply added to a pile of existing ailments and anxieties. An IBS flare-up refuses to be left as an afterthought. ‘I AM HERE’, it screams loudly, amidst a cacophony of fart noises.
Like, when it comes to intimacy, here are some of the thoughts that flood my brain: Does my partner find me sexy when I’m bloated? Is the constant burping rendering me unattractive?
Is the athleticism I’m showing when running to the bathroom impressing them?
I’m also constantly in fear of the next flare-up so when I go out on a date and want to have a good time, a part of my brain is calculating what the ‘safest’ item on the menu might be. When you’re in a body that does not listen to you, socialising, intimacy and partnered sex can become overwhelming experiences as you’re wanting to be in tune with your body but cannot. I have to battle the self-disgust that I sometimes feel because I become convinced that other people cannot love this body. I have to love it because I am in it.
One time, I had a flare up the day before my partner’s birthday and during the midnight celebrations, I could barely eat anything. I felt so guilty at not being happy enough and not being able to even have cake to celebrate my partner. I retreated to bed early because I was so tired, though I’d have loved to continue partying.
A date night that should have ended with some good times in the bedroom ended with me in the bathroom, sobbing over the toilet bowl because the food that I had eaten that day was not sitting well in my stomach but I could not get it to come out from either side!
Right now, my partner and I are doing long distance. We are planning a trip together to meet after two years and I am terrified of my gut playing spoilsport to our joyous reunion. I might be paying more attention to getting my medication kit ready than my luggage. Adventure awaits but only if there is a restroom nearby!
The guilt of not being able to meet someone’s needs when you are not in the best of health is a constant undercurrent. Sometimes, I do not have the energy to focus on anything but work (because money=healthcare) and sustenance. My sex drive had also drastically reduced when I initially fell sick as well as after I received the diagnoses post months of medication and testing. I no longer felt the need to do anything but wallow in my own misery. My partner was very supportive through it all but I imagine it was difficult to watch as I ran around the apartment after dinner, trying to find relief, one way or another.
As a lot of people with chronic illnesses and disabled persons will tell you, the difficult part is that there is no ‘getting better’. There is only management and taking risks where you need to. I am still in the process of coming to terms with my body but I’m not always successful. I am often cruel to myself because every time I take a step forward in my life, it feels like IBS makes me take two steps back. I’m trying to work with the status quo while also being terrified that it’ll worsen as time goes on. The goalposts of loving my body keep changing. So a lot of the effort of self-love goes towards unlearning the very capitalist criteria that are used to judge if my body can be considered valuable or ‘useful’.
It also helps to read and listen to public figures who struggle with similar issues. Samantha Irby and Hannah Witton are my current favourites - I love the humor and punch-in-the gut (no pun intended) honesty through which they view their bodies. Now, I often find myself impressed rather than annoyed by my body in embarrassing situations such as having to deploy Olympic-level flexibility to take a stool test in a tiny hospital bathroom.
Moving my body the way it wants and trying not to set standards for consistent performance has been a game changer as has making the conscious decision to sometimes eat what I want to, knowing that the next day I’m going to feel terrible. It’s the game of life baby!
What I’m trying to say to myself and what I’m trying to live by is the idea that I am powerful and beautiful when I do the things I want to do, while tending to my body and my needs. I have to remind myself that the setbacks are not punishments- they are just signals that my body and mind are sending me when I need to stop and tend to myself. Now, is that not a body worth loving?
Darsana Mohan was born in 1990 and is a poet and writer from Kochi, Kerala. Her writing has been featured in The Alipore Post, Feminism in India, YourStory, Four Seasons Magazine, Women’s Web, Tint Journal and Bengaluru Review. In her spare time, she enjoys reading books and scrapbooking.