It happened again last night. My husband and I were watching a show, and there was the punchline about the family member with IBS. Oh haha, you know Aunt Myrtle with IBS. It’s an easy laugh like most potty-humor. I get it, and before the waves of “what a snowflake” come, I’m not saying it needs to be banned. I’m just here to tell you about the sting I feel every time I am reminded by people, pop culture, the media and my doctors that IBS is not taken seriously and is oftentimes a joke. Whether it’s the main character whose IBS is mentioned to highlight her anxiety, awkwardness and lack of sexual desirability or a passing remark about a neighbor, if you listen for it, I bet you can find it in at least half of the comedies you watch.
When I heard it, I felt this wave of shame come over me. I saw my husband glance over at me, unsure of how I was going to react. This time I tried to ignore it externally. Last time I sighed and mentioned something about feeling sad that my diagnosis is a punchline when to me it means weekly moaning into a towel from pain trying not to bother anyone. I go through the conversation internally but decide not to bother my husband with the same conversation tonight.
Related: 5 Ways to Make the Most of Flare-Up Days
But inside, it gets me thinking. It gets me thinking about how every single day I have some kind of pain and how every twinge makes me worried that I am going to have an attack at my kid’s school or somewhere without an accessible bathroom, gritting and sweating trying not to embarrass anyone. How this constant source of physical and emotional pain has defined my life. I have worked through it but every relationship I have, everything I do, everything I try to do and fail at is affected by my health. How we live paycheck to paycheck because we spend many thousands of dollars a year on my health. How I have limited my eating more than I knew possible, tried many medications, done therapy, exercised, meditated, done yoga, you name it, just to try to make my life more… livable. At 27, I am profoundly limited in what I can do. Yet this thing I fight every day is a joke to most people. It’s something to give you a good chuckle while you think about how undesirable that person is. It’s enough to make me feel undesirable for a moment.
And as much as I try not to, I have internalized this. I have spent six years refusing to accept a diagnosis of IBS because what I have feels so much more “real.” The news anchor in one show has her IBS mentioned, always as a joke, while working 80-hour weeks. I am nervous about being able to hold down my nine-hours-a-week job with my health. So clearly, I couldn’t have IBS. I have thrown thousands upon thousands of dollars and gotten angry at doctor after doctor for diagnosing me with “just IBS” – just a joke that means someone stinks up the bathroom. I avoid telling people my diagnosis because I know the sound bites about IBS they have heard (and half the time they try to relate to me telling me about how nacho cheese gives them a stomachache, but that’s a whole other thing).
Chronic illness changes your life. It never goes away. Every single day is a fight. And adding an element of shame to your diagnosis, feeling like you are going to be everyone’s punchline if you say out loud what’s in your medical file, is something I don’t wish on anyone who has already been dealt a bad hand. It adds to a pile of shame that someone limited by their health may already have. I guess my goal here isn’t to end these jokes, just remind you that there’s a real human person behind them and that if anyone ever tells you that they have IBS, you can see past the jokes at the person. So here it is I guess: My name is Jacqueline, I have IBS, and it’s no laughing matter.