It’s almost impossible to explain what it’s like to have your life change in one moment. Words crumble into letters, then into illegible hieroglyphics when you try to squeeze a feeling so big into the space between periods. Everyone experiences change in their own unique way, but it's always a shock to lose your sense of normal. With a lifelong illness, so many of the early days of the journey are dominated by confusion, anxiety, and uncertainty. Before a diagnosis, you're forced to fight an invisible war with an invisible enemy. On a daily basis, you deal with unexplained medical issues like abdominal pain, bleeding, and fatigue. Yet, all the while, you have no real option other than to go on living your routine life. For weeks, months, or even longer, you live a double life as a patient bouncing from doctor to doctor, and as your past “normal” self who deals with all of the chores of your past. Ultimately, a diagnosis provides only an answer, not all of the answers.
There’s never a convenient time to be impacted by an illness, but it seems like human bodies break down at the most inconvenient times possible. It’s like how alarm clocks always seem to go off only two minutes after you fall asleep. I was a freshman at university when I first experienced the symptoms of ulcerative colitis. College is supposed to be the beginning of a lot of things. It’s the beginning of adulthood, of professional life, and of real independence. For me, though, it felt like the end. I thought my life was over, and that the future held nothing but medical challenges for me. The truth is that being sick is incredibly lonely, and it’s difficult not to feel like a burden. When you’re surrounded by illness, doctors, and medical appointments, it’s easy to turn inwards to protect yourself. But, by doing that, you also cut yourself off from the outside world.
Loneliness is a feedback loop. In essence, the lonelier you feel, the less you feel you can reach out to others, and the less you reach out to others, the smaller your social circle becomes. Interestingly, in the Internet era, people seem to be lonelier than ever. Despite the fact that we live in a world where connection is constant, people seem to connect less. To clarify, I don’t think technology is evil, or that it’s destroying social structure. It's just overwhelming, and it can be intimidating to be vulnerable and sincere online. But, it’s also incredibly important to be those things.
By speaking truthfully and sharing our stories, we show others, and ourselves, that we are not alone in our battles with chronic illness. We learn more about how to manage our conditions, and we contribute to research. Most importantly, we connect and grow the chronic illness community. Through meeting and talking to others, online and offline, I’ve made new friends, and eased my own feelings of loneliness. I encourage others to share their journeys in whatever form they feel comfortable, and to reach out for support. Together, we are stronger than we are alone. Together, we can make invisible illnesses and struggles visible to the mainstream. So, drop me a line, sometime.