Does Knowing Why You Got Sick Matter?

I have theories about why I got IBD. But I’ll probably never be able to prove them.

The beautiful chaos of everyday life fills my days. I attempt to balance parenthood, working life, and “me time” — whatever that even means. My ulcerative colitis (UC), in remission, hasn’t been much more than a passing thought for nearly 2 years.

Even so, I’ve recently found myself wondering once again: Why me? Why did I get sick?

I was diagnosed with UC when I was 19. I was in a car with my grandmother and my mom, somewhere on I-95 between Connecticut and Washington, D.C. on my way to begin my second year of college, when the doctor called to confirm the suspected diagnosis.

Finally, after months of feeling unwell, losing nearly 20 pounds, and visiting countless doctors — many who asked me the infuriating question: “Are you making yourself sick?” — and after undergoing lab test after lab test and a colonoscopy, I had a reason why I was sick. And then, a course of action to get better.

Yet, I didn’t have a reason as to why I developed UC.

As the treatment plan started to work and I began to feel more like myself, my rational, contemplative nature kicked in. I read books and articles on UC, asked question after question, and got frustrated with my inability to find an answer to why me?

As I felt better, I did what you, of course, shouldn’t do. I stopped taking the meds. I was experiencing both denial and bargaining.

Being diagnosed with a chronic illness often forces us to go through the stages of grief: Denial. Bargaining. Anger. Depression. Acceptance.

Swiss-American psychiatrist Elizabeth Kübler-Ross outlined the five stages of grief in her 1960s-era book, “On Death and Dying,” based on her work with the terminally ill. While we commonly think of those stages of grief as part of the process of mourning the loss of a loved one, Kübler-Ross originally developed it for people who were ill.

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Worries for the future

I, of course, got sick again not long after I stopped taking the meds. It was the signal that I needed to accept I was ill, even if I didn’t know why.

I restarted the meds and, feeling better again, I moved on — this time, though, I kept up with the doctor check-ins and treatment options.

It wasn’t until I became pregnant with my daughter that I again thought about why I was sick. I wanted the world for my child and, while pregnant, I worried about so many things, including how my UC would affect my pregnancy and whether she would end up with UC.

Of course, there’s no way to predict that. While a family history of UC does increase someone’s chances of developing it, only 5 to 20 percent of people with IBD have a parent or sibling with it.

Still, when my gastroenterologist asked if I wanted to enroll my daughter in a study researching the gut health of kids whose mothers have IBD, I signed her up, hoping at the very least it might help someone else one day.

And then new parenthood filled my days, and once more I stopped thinking about the why.

Revisiting the past

Lately, though, I keep returning to that question.

I’ve found my work as a food, health, and climate reporter colliding with my illness. My newsfeeds these days are filled with reports of PFAS (per- and polyfluoroalkyl substance) contamination on Maine farms. But PFAS chemicals are not limited to Maine, or to farms.

Also known as forever chemicals, PFAS are a class of industrial chemicals widely used in many things we use every day: nonstick frying pans, stain-repellent carpets, waterproof jackets, fast food wrappers, and more. They’ve also been associated with a long and growing list of health problems, including cancer, kidney malfunction, and UC.

Funny how simply seeing a headline can make you recall details of your life in a new light.

I can picture it like it was yesterday. Skipping on the sidewalk, my hand in my grandmother’s. I’d spend time every summer with her in tiny Hoosick Falls, New York, as a child. There would be ice cream for dinner, walks in the rain, and stories about everything and anything, including quite a few about my mom and aunts and uncle that they would probably have preferred she didn’t share.

They were the best days. And yet. Hoosick Falls has also made headlines in recent years for forever chemicals in the water supply. Did the time I spent there make me sick?

Could that be the answer to the why me question I’ve asked since I was 19? Maybe. Maybe not.

There’s no real way to know. I spent more time there with my grandmother during the years when the water was supposedly contaminated than anyone else in the family. I was the only one who got sick (knock on wood, so far).

And I didn’t just get sick with UC. In the years since I was first diagnosed with UC, I’ve also been diagnosed with cancer and a blood platelet disorder.

Three rather unusual, seemingly unrelated issues, one doctor once casually remarked while going over my medical history. While I may never know if or how they’re connected, I always mention it to doctors now — just in case it helps me or someone else one day.

I could have my blood tested for PFAS levels, but it’s not an easy or inexpensive test. And what would it tell me? Likely not much of anything.

It would tell me what my PFAS levels in my blood are right now, not what they were more than a decade ago when I was first diagnosed with UC. I already know I was exposed to high levels of PFAS. What I don’t know is how they affected me.

Does it matter? I’ll still be sick. And I still wouldn’t trade those summers with my grandmother.