What I Wish Others Knew About Life with UC
An average day of life with ulcerative colitis cannot be explained by all of the Oxford English Dictionary words, or squished between cascading columns of commas on a blank page. Each day is like an unopened fortune cookie with a paper-thin prophecy crammed safely inside the shell, just waiting to be unlocked. Poetry aside, the future is not as permanent or material as a lukewarm fortune cookie waiting on top of the receipt at the end of a hot meal. The reality of living with UC is that each day is a gooey blob of uncertainty. Living with a chronic illness like UC means embracing disruption and chaos as a part of the everyday.
In the morning, life with UC can be motivating, uplifting or exhilarating. Some days, I’ll wake up to blue skies and birds chirping, with good news waiting for me and a sense of accomplishment adding to the spring in my step. But by 3 p.m. sharp, I’ll feel the energy sputtering out of me like the world’s saddest balloon, as pain settles into its place. Other days, I’m trapped outside of my comfort zone, doubt and fear chaining me down and keeping me from my goals. On lucky days, I’m carefree and resilient, able to sidestep any obstacles and end the day feeling normal and fulfilled. Simply put, living with UC is incredibly unpredictable. There is a broader range of experiences in a day with chronic illness than colors in an evening’s sunset.
While few things are certain with UC, living with it for five years has forced me to adapt. Our current society is not equally accessible for all, especially those with illness or disability. As such, learning how to navigate the everyday world is vitally important for anyone living with chronic illness. I’ve learned how to fake normalcy and how to fake a routine. For instance, I always start my mornings with a typical shower, breakfast, toothbrushing and pill-taking. As I’ve lived longer and longer with UC, it’s become easier to role-play a routine, even on the days when it’s merely a fantasy, dragons not included. While I’m aware that I was stuck in the bathroom for an hour because of painful cramps or bone-rattling nausea, the outside world is none the wiser.
Instead, I’ll blame traffic or a surprisingly empty gas tank for my delay. I confess it should be easy, to tell the truth. In the real world, it’s frustrating, time-consuming, and even embarrassing to have to repeatedly explain yourself and your illness to others. Chronic illness is not an easy thing to explain. It’s something you have to experience directly or as a caregiver to fully understand. A consequence of perfecting your ability to lead a normal life is that it conceals the fatigue, the brain fog and other symptoms that I carry through my day. In particular, it’s hard to see the differences between my everyday routine and that of someone without a chronic illness, unless you look below the surface. I’ve been told ‘you don’t look sick’ or ‘you seem healthy’ often, like many others living with UC or other chronic illnesses.
Nonetheless, by midday, I’ve likely knocked out several work projects. A common and toxic misconception is that those with chronic illness and disabilities are less productive or capable. The reality is that those with chronic illness are actually forced to work harder due to the obstacles their health creates. Most of us are continually striving to excel. Accommodations, such as access to a bathroom, remote work and a flexible schedule to attend appointments, equalize the playing field and help me be productive. For the average individual, there’s only so much time in a day, and only so much one can accomplish in that time. The same applies to an individual living with UC like me, except there is even less that is in our control. There are additional limitations and pressures placed on you when you live with a chronic illness. From time to time, all humans experience the vice grip of stress. It creeps up on you and squeezes down hard when you least expect it, whether it’s an unexpected flat tire or a rapidly impending deadline. It’s only natural.
Due to my illness, there is always some stress in my life. It runs in the background like a forgotten program chewing up all the RAM on a computer. Sadly, human bodies don’t come with a task manager or a restart button. Instead, this stress becomes the static of daily life with UC. I monitor my symptoms, and I paradoxically plan for the unpredictable. If I’m at work or simply out and about, I immediately scan the environment for a bathroom. The ability to locate a bathroom anywhere is truly a supernatural ability of people familiar with UC.
As a backup, I always carry an emergency kit of essential supplies with me. The kit contains, among other things, safe snacks, wipes, clothes, medications and a mishmash of various other items. Each item plays a critical role in providing peace of mind for me, even if I don’t actually use the item. For instance, by carrying foods that I know won’t trigger my gut, I’m ensured that I can eat at least one meal until I’m home, if I can’t find sustenance elsewhere. (I’ve become a skilled linguist and can decode most modern menu hieroglyphics without a curse befalling me, but again, it’s nice to have a backup.) Attention to detail and planning are another part of everyday life for me that goes unnoticed by most. When you live long enough with UC, even your most quirky habits become invisible.
By the time I’m home, the fatigue I’ve carried with me all day is usually bubbling over. Fatigue piles up like a child stacking smooth stones on a shoreline. Every morning, there’s a certain number of stones to start; sometimes I’m lighter, and sometimes I’m heavier. Nevertheless, there are always some stones. As the day goes on, the stones keep stacking up until they outweigh me. By then, I’m usually fast asleep in bed. Despite fatigue, there are usually things I have to handle in the evening before I can rest. This often means having to make sacrifices. I’m often torn between finishing side projects, engaging in my hobbies or socializing with my friends. The truth is that there’s usually not enough time left in the day, or there’s not enough energy left in me to get everything I want done. The truth is that, for those with chronic illness, the choices and sacrifices never really stop. After the meals are made, the work is done, the house is tidied and the friends are seen, there are still choices to be made. Big decisions like choosing to continue on a medication, and small decisions like skipping a social event to get additional rest. Likewise, they have to get made.
Tomorrow, the cycle restarts. Ulcerative colitis is an everlasting commitment and unbreakable bond — at least for now. Every day is different, and every day even the changes in my life change. Like I said at the start, it’s exhausting and frustrating. More than anything, it’s a challenge as tremendous and unknowable as infinity. However, every day is also beautiful, thrilling and full of joy. I’ve learned that life is a rollercoaster. I’ve survived the peaks and valleys alike, even when I felt like screaming until my face turns a deep-plum purple. I’ve met many other incredible people living with UC who inspire me on every average day of mine through my journey. I’ve learned that the bad can be overcome, and the good can be savored. If life is going to be a twisty, topsy-turvy ride, well, you might as well enjoy it. So, in conclusion, tomorrow, I’ll wake up, claim and overcome whatever fortune is waiting for me.