Living with UC, or any chronic condition, can be extraordinarily overwhelming. It’s the type of condition that is a constant source of friction in your life, like nails scratching on a chalkboard over and over again, or sandpaper scraping against your skin. UC is always there — sometimes only in the background but sometimes very much out front — an unpleasant obstacle that is with me every day. UC is ever-present and simultaneously out of my control that how I live with it can be difficult for me to explain and challenging for others without UC to understand. Most individuals in my life see the fragile routine and the opaque mirage of “health” I’ve created for myself but not the effort I put in to keep it all from crumbling apart. It’s like I’m standing at the top of a mountain, staring across the void, down at the world. I can see others going about their days in the villages, towns, and cities from my perch. They march on and on through life in a harmonious blend of normalcy. If someone were to glance up at the mountain top, most likely I would fade into the seams of the surrounding scenery or even the threads that tie together reality’s background. And even if I was spotted, it would look like I was standing aloof atop the mountain, high above, with my head in the clouds. No one would be able to see how I’m constantly perched precariously on a cliffside, one step from falling off the mountain and into the void of illness.
Put more simply, chronic illnesses, like UC, can be isolating. They run deeper than words or language, into the bones, the blood, and the aching bodies of patients like me. This is at the heart of the confusion that surrounds illness, unless you’ve experienced it yourself as a patient or caregiver. Plus, even if we accept that only patients can fully understand what their symptoms and experiences are like for themselves, the reality remains that every individual’s experience is different. No two individuals living with UC are the same, nor do they experience inflammatory bowel disease (IBD) in the same way. As a result, misconceptions swirl and spiral around UC and the realities of living with it like furious flurries on a fleeting winter’s day.
One of the most common misconceptions about living with UC, and many chronic conditions, is that appearance is equivalent to health. Many believe that if someone doesn’t look sick, they must not be sick, or at least not that sick. The reality is that the severity of someone’s UC has little, if any, connection to their physical appearance. There have been times when I have looked to be at my best, with skin glowing, a smile plastered across my face, and a lively party roaring around me, et on the inside, UC felt like it was was carving me up, clawing at my intestines and my bones. Likewise, there have been times when I have seemed drained, flat, and gray, yet on the inside I was healing. One of the main reasons this misconception exists is that most can’t see the full picture of a patient’s life. Returning to my mountain, most people see my life, or rather my health, from the valley below, at a distance, making it difficult to see the things about me that aren’t public knowledge. It’s easy to see that I am wearing a blue t-shirt or that I have short hair. However, it’s not so easy to see the sleepless nights, the many visits to doctors’ offices, the blood draws, or the countless other things I go through to look normal.
Misconceptions about UC run deeper than the surface, and appearance. Nearly every patient has been confronted by often well-intentioned friends, family members, and even acquaintances who struggle to understand the significance of a chronic illness like UC. There’s a tendency to either overreact or underreact to the news that someone lives with UC. For instance, someone may compare UC to having the stomach flu. This can incite unhelpful comments like. It can’t be that bad. I’ve had the stomach flu before, I know what it’s like.” It’s even common for individuals to mistake inflammatory bowel disease (IBD) for irritable bowel syndrome (IBS), two distinct conditions that are both unpleasant but that come with an entirely different range of symptoms and patient outcomes. On the flip side, in my experience, it’s also not uncommon for others to hear that someone is living with UC and overreact or become instrusivel. They may question the abilities or choices of an UC patient, believing them to be incapable of being independent or operating without assistance. They may say things like, “Should you be eating that?” or “I had a friend with UC once. “I have a friend who has UC. I could never live her life. It’s awful.” Though these comments may come from a place of kindness, they can be off-putting and demeaning. The reality is UC is a condition with a vast range of experiences and degrees of severity. As opposed to someone making broad assumptions about my health, I find it helpful and refreshing when others treat me as a person, express interest in genuinely learning more about my experiences and IBD, and accommodate my needs and boundaries.
Perhaps the most challenging misconception to deal with as an UC patient is that individuals don’t know their bodies best. This misconception can be as blaringly loud as sirens raging through the midnight stillness or as subtle as a seed in the rain waiting to sprout. It’s frustrating to feel like you always have to play defense and explain yourself to others. Yet, I would be lying if I claimed to be the only patient who has been questioned about their dietary choices or struggled to advocate for themselves in public. The truth is being misunderstood is an unfortunate consequence of being chronically ill in a world and a society intended for those who are able-bodied and have fleeting experiences with illness. Most people see illness as a cold or a wound, not an everlasting state of being. This leads to various misconceptions, like the idea that UC is temporary or can be “cured.” The lack of understanding can also cause patients to have to fight for accommodations, like access to a bathroom or more convenient parking, because they don’t fit the textbook picture of illness. For instance, their symptoms can’t be real, because they’re too young to be sick or because people with IBD shouldn’t be able to work. These misconceptions reduce people to tropes and are a result of a failure to perceive people on more than a superficial level.. They spark unwanted judgment and questions from others like, “It must be so nice to be able to lose weight so easily,” or, “If you didn’t just lay around all day, you would feel better.”
Simply put, there’s a misconception that illnesses like UC are a deliberate choice that patients are making and that if “better choices” were made, these patients wouldn’t be sick. In reality, patients want nothing more than to feel well and fight tirelessly to be normal and live up to the expectations of others. As a patient, UC is constantly on my mind — when I’m in remission and when I’m flaring, like a playlist subtly playing a nagging song all day in the background.. I’m working every day to remember that my experiences as an UC patient are valid and that I know my body better than anyone. Still, it’s nice to be listened to, and more importantly, to be believed.
Dealing with UC’s physical and emotional challenges can be a confusing and frustrating experience. It doesn’t help that it can seem like others will never understand what it’s like to be chronically ill, and it’s hurtful when it seems like people aren’t even trying to understand. However, I have found acceptance and support through the patient community in ways I never expected. I have watched other patients band together to change the conversation around illness and educate others on what it means to live with UC. In fact, I have become a better patient and advocate myself through these community conversations. By sharing my experiences and being a positive presence for other patients, I hope that I can help others realize that they are not alone and that they are greater than any misunderstandings or false judgments that are thrown their way.