“Hi! My name is Kristen, I love to dance, eat chocolate chips, I’m a blogger…. Oh, and I have undiagnosed tummy problems.” Ok, so maybe that isn’t the most graceful way to introduce myself, but you get the point. Although I don’t feel defined by my illness, it does play a major role in my everyday life.
I have never really felt right for as long as I could remember, but things got dramatically worse in my senior year of high school. While my friends were making appointments to visit colleges, I was making doctor’s appointments, traveling from lab to lab, pooping into cups, and getting scopes. After losing 60lbs and having chronic diarrhea, I experienced medical gaslighting and over 7 doctors told me it was “all in my head.” They would prescribe me medication and tell me to change my diet and then proceed to schedule an appointment to see me in 6 months. After a few months of this back and forth, I was diagnosed with “Irritable Bowel Syndrome” aka IBS.
For those who aren’t familiar with IBS, it’s a diagnosis that doctors give someone when they don’t know what’s going wrong. A large group of people are lumped into this category, which creates an awful lot of misconceptions about the severity of it. Some people have mild symptoms like occasional gas, bloating, and irregular bowel movements while others like me have more severe symptoms like fatigue, malnourishment, weight loss, fevers, incontinence, the list goes on. I don’t like to be looped into this category because oftentimes when I tell someone I have IBS, they assume that I just have bloating from time to time, meanwhile, it’s much more complex than that. And to be honest, no one is confident that I have IBS.
As time went on, I began to develop brain fog, fatigue, and widespread pain which lead to my second diagnosis of Fibromyalgia. Fibromyalgia is a chronic pain syndrome caused by a malfunctioning nervous system and misfiring of pain signals in the brain. Just like IBS, there is no test to confirm the diagnosis, and many people believe it’s not real.
So at the age of 17, I had two diagnoses, that translated to: I’m not sure what’s wrong, but something’s wrong.
From that point on I have been to several doctors and specialists to try to get to the bottom of it and get it under control (spoiler alert: nothing has worked). Probiotics, Low-FODMAP, paleo, dairy-free, gluten-free, high fiber, low fiber, antibiotics, antidepressants, digestive enzymes, yoga, kale, you name it– I’ve tried it. After not seeing any results from treatments, it’s pretty clear that this isn’t a regular case of IBS, and something slightly more serious is going on. Not taking no for an answer, I have been forced to advocate for myself, request tests to be run, and occasionally break-up with a doctor or two now and then.
I am still unsure of what is wrong with my body, and tend to refer to myself as a “medical mystery.” Unlike other 20-year-olds I spend a lot of my time being a professional lab rat, hopping from doctor to doctor, waiting on hold with my insurance, and searching for the nearest toilet. I currently am still undergoing tests but I mostly try to manage my health through my diet. (I’d like to call it “Paleo-ish.”)
Not knowing what is happening to your body is one of the most terrifying feelings anyone could ever experience and having it happen when you are a young adult can be incredibly isolating. Poo is a pretty taboo topic, and although plenty of people enjoy shit-talking, they don’t enjoy talking about shit (Ironic, right?). All puns aside, when you live with an undiagnosed illness you are met with uncertainty and are forced to face the fact that no one knows how to help you, and unfortunately, not everyone will believe you. (But I’ll save that for another blog post).
I created my blog to share my journey on the quest for gut health, but more importantly to show others experiencing invisible illnesses that they are not alone, and that it’s not in their head. I am passionate about not letting my chronic illness, and food intolerances stop me from living my best life and embracing the highs and lows that come with it.