(TELL ME) SOMETHING’S WRONG

I’m going to go out on a vulnerability limb here and disclose that I’ve had tummy problems for quite a while. In 2018, I finally went to see a gastroenterologist about it, and I was told I had IBS (Irritable Bowel Syndrome) and acid reflux. I got an upper endoscopy to find out the extent of the damage and was surprised to hear it all looked pretty good. My doctor told me to take a daily acid reducer (like Zantac, until it was yanked off the shelf--a huge blow to anyone with a nervous belly) and heavily restrict my diet. He told me that I should eat small amounts of approved foods every few hours. For example, for lunch I could have half a sandwich and then two hours later I could eat the other half. When I remarked that living this way seemed incredibly difficult, he laughed and said, “Yeah, I couldn’t do it!”

Needless to say, I didn’t really heed this professional’s advice. I tried to restrict certain foods over the last few years to varying degrees of success. But mostly I just lived with my symptoms that included going to the bathroom more frequently than most people, lots of gas and TONS of burping. (I tried to warn my boyfriend about my burping when we first started dating, but he was still quite shocked by both the frequency and volume. This, honestly, is understandable. When I’m having a flare-up, I have enough burp content in a week to record an entire album-- not that anyone would buy it. Except maybe my mom.) I started to view all of this as my “normal” and would only grow concerned when I would have flare-ups that included vomiting. But even as I retched over the sink, the toilet or my food container, I would downplay what was happening. I would blame my diet or my stress level. I had already seen one doctor (years ago) and the solution was to just never eat anything that tastes good until I die. I wasn’t willing to do that and, therefore, I had to pay the consequences.

But then I got knee surgery and the pain medication caused me to vomit pretty frequently. And since I was basically couch-bound, my poor boyfriend was the one who had to clean it up. I couldn’t really downplay what was happening and say, “This is no big deal!” as he washed out a pot filled with my puke. So, when he encouraged/begged me to see another gastroenterologist I agreed and made an appointment. A mere two months later (thank you, American healthcare), I finally had my first consultation. I sat there expecting to be chastised for my dietary choices but instead the doctor took my concerns seriously. She wanted to run a bunch of tests to rule things out and she didn’t once blame me for what was happening. I could hardly believe my luck! But my cynical brain figured this was just a reprieve and after all the tests inevitably came back negative, I would once again be looking at a life that requires an entire afternoon to eat one sandwich.

That’s why I was so shocked and delighted to learn that two of the three tests came back positive! Not only do I have a (slight) sliding hiatal hernia that exacerbates acid reflux, I also currently have SIBO, which stands for small intestine bacteria overgrowth and explains all my symptoms. I couldn’t believe it! I felt a rush of relief and validation. I finally had something tangible to hold onto other than my lack of dietary willpower and a predisposition for a nervous belly. I no longer felt like a drama queen but someone who needed medical treatment.

This reaction, while thrilling in the moment, revealed something problematic about the way I view myself and the world. Getting the SIBO diagnosis didn’t change my symptoms, but it suddenly validated them, which begs the question: why did I need a diagnosis to honor my suffering? Why did I need to hear that it wasn’t my fault in order to feel comfortable caring for myself?

The other morning John and I were driving to pick up breakfast when I realized I needed to go to the bathroom. Before my SIBO diagnosis I probably wouldn’t have said anything and powered through despite my immense discomfort. But something about having a diagnosis outside of murky “IBS,” allowed me to ask him to drop me off so I could go to the bathroom while he got the food. I was proud of advocating for myself in that moment, but mostly I was embarrassed that I hadn’t been advocating for myself the whole time.

One problem with waiting until we have a medical or mental health diagnosis to validate how we are already feeling is that diagnoses can be hard to come by. I have no idea how long I’ve had SIBO, but I do know that doctor in 2018 never tested for it. I also know there are many of people who are suffering from mental health symptoms that are disruptive to their lives but don’t meet the criteria in the DSM for any disorder. In a world filled with an onslaught of terrible news and extreme distress, it can feel silly or indulgent to pay attention to any issues that aren’t officially diagnosed. So we downplay our discomfort. We adapt to our “normal.”  And we do our best to not complain too much. But suffering in silence doesn’t stifle the pain or discomfort. It just makes it harder for us to properly care for ourselves.

I’m seeing a SIBO specialist this week and part of me (the OCD part) thinks he will look at my test results and say my other doctor interpreted them wrong and I’m actually perfectly fine. But a stronger part of me knows that SIBO or no SIBO, I am not fine. And even more importantly, I no longer need to pretend to be.

xoxo,

Allison