My Diagnosis Story
My life changed on April 3, 2014. That was the day I went from Healthy Person to Sick Person, at least in my own mind. That was the day I left my doctor’s office in a suffocating fog, the words chronic and disease and medicine reverberating in my head.
I had been sick for several months already. I’d started noticing strange, embarrassing symptoms the previous October: gas, then a touch of diarrhea, then urgent and frequent diarrhea. When I saw blood on the toilet paper, I had to admit something was wrong. I scheduled a doctor’s appointment, but still, I thought this was probably nothing. An allergy, maybe?
After the small bit of blood, there had been more blood. A lot of blood. To a person who sees herself as healthy, there are few things scarier (or grosser) than a toilet bowl full of bright red blood.
I soon found myself subjected to my first colonoscopy, at the age of thirty-five. To my relief, aside from the several hours I spent on and near the toilet prepping for the procedure, the colonoscopy itself was nothing—I fell asleep describing my symptoms to the brusque, white-haired doctor, then woke up, pain-free, in a different room.
When I awoke, I was already in the middle of a conversation with the doctor, who didn’t realize I hadn’t been awake until now. “If you’re going to have an inflammatory bowel disease, this is is the one you want,” he was saying. “It’s just proctitis, just the lowest part of the colon. The rectum.”
Ulcerative proctitis, a form of ulcerative colitis. Years later, when a relative would be diagnosed with the same disease, she would report that her doctor used these exact same words to inform her. Do they teach this phrasing in gastroenterology school?
I suspect that these doctors were both trying to break the news gently to us patients. By breezing past the word “disease,” and hurrying to the reassurance that what we had was minor, they thought they could save us from despair.
But it backfired: in both our cases, the despair was only postponed. I had to inform my poor relative that she did, in fact, have the same disease as me—the disease that had totally upended my life and was anything but mild in my case. She was distraught.
My doctor sent me home with pills and suppositories, which I was to stick up my butt each night on my honeymoon in Morocco and Spain, where I was about to go with my husband Ron. The suppositories weren’t the most romantic item to bring with us, but I figured if this was what I had to do to finally get back to normal, I would do it. I mean, no one would have to know. It wasn’t like I’d someday blog about it or anything.
Aside from my illness, our trip was the trip of a lifetime. We traveled for three weeks, splurging on a few nice places, visiting the markets of Fes, the Roman ruins at Volubilis, the holy Muslim city of Moulay Idriss. Then we took the ferry to Spain and saw the Mesquita, the Alhambra, Granada, Seville. We had hoped, finally, to start trying for a baby on the trip. At thirty-five, we’d waited about as long as we dared.
The problem was, the suppositories didn’t work.
My symptoms improved at first, but by mid-trip I was emailing my doctor desperately, describing my bowel movements in mortifying detail. The blood. The color of the blood, the amount of it, the frequency. The way I sometimes had to run for the bathroom, clamoring through crowds of tourists at museums, or getting cold sweats on bus rides as I struggled to wait another hour.
We should see you when you get back, the doctor wrote. For now, take over the counter anti-diarrheal meds. So I did.
We decided to hold off on trying for a baby. Just a little longer, till my health returned.
We arrived home in Madison, Wisconsin, jet-lagged but happy. I made the first available doctor’s appointment, for two days later—April 3. My doctor wasn’t available for weeks, so I saw a physician’s assistant named Carrie. It was during my conversation with her that I came to understand that my disease might always be hard like this, and that it was never going to go away.
The realization came as she was describing the new meds she’d give me. She mentioned that, if I was lucky, I would eventually “only” have to take one pill a day. At this comment, I began to feel the floor drop out from under me.
I’d been under the impression that the meds were temporary—that once this got under control, it would more or less be gone, just as the flu is gone once you’ve treated it. Now I finally realized that I was chronically ill, that I had a disease that could only be managed but never cured, that for the rest of my life I would have to rely on medicine to keep me well.
She also told me the first doctor had prescribed the wrong med. “Entocort, that medicine you were taking? It’s for Crohn’s. Crohn’s is often farther up in the digestive tract, in the small intestine. Colitis is in the colon. So we’re going to back off a bit on your meds. I’m going to give you something called Lialda, that targets the colon specifically, and specifically the lower colon.”
Don’t worry, Carrie said, as I sat still reeling in my chair. Colitis does go into remission. Most people with it lead very normal, long lives. It’s just a matter of finding medicine your body responds to.
Nevertheless, driving home, I couldn’t breathe.
At home, I Googled my new disease, something I hadn’t had time to do before our trip. I wished I could call Ron, but he was a substitute teacher and was unavailable during the day. My Googling only made me more terrified. I learned that my proctitis could progress into worse forms of colitis, and that no one knew how to prevent it from progressing.
And I was still grappling with the fact of my proctitis alone. It might be minor by IBD standards, but IBD standards weren’t my standards. This was not me. I was a healthy person. Maybe there was some mistake, I thought. How could it possibly be that just months ago I’d been healthy, and now out of the blue I was sick? It didn’t make sense, and I resisted it in a full-bodied way, like a prisoner wrongfully accused, kicking and screaming.
Why I Started This Blog
Over the following months, as my struggle dragged on, I would devour a dozen books about my disease. I would also continue with more appointments and procedures, as well as with various special diets.
Chronic illness is like simultaneously aging decades and taking on a new job. You suddenly have copious appointments, research, cooking, and self-care practices that gobble up all your time, and meanwhile, you have far less energy than ever before with which to do it all.
But my doctor had been right about one thing. I was, in many ways, lucky. I was a self-employed writer, with only a part-time job as an environmental scientist—so for now, I could afford the time it took to research my disease.
The doctor was also right that, although proctitis would turn my life upside down, it was still far from the worst illness that could have befallen me.
As I came to understand my own good fortune relative to so many other patients, I became passionate about acting as a resource for others. I am a helper, and this was something I realized I could do. If I had to have a disease, I could try to use my disease to help other people. Unlike many others with debilitating illnesses, I still had the energy and ability to write. I could blog about what I was learning.
My main purpose in blogging was to become a bridge between the sick and the healthy. Crossing over into the world of the sick, it often felt as though I had suddenly become separated from my healthy friends and loved ones by a thin pane of glass that only I could sense.
Their well-meaning questions sometimes just thickened that glass. “Do they know what causes your disease?” “Is it from stress?” “Have you tried going off gluten?” In these questions, I could feel my friends’ and family’s desire to help me problem-solve, but I also thought I sensed an unconscious fear. If we can fathom the cause of someone else’s misfortune, we can reassure ourselves that we’ll avoid it in our own lives. But the truth was, whatever the mysterious cause of my illness, I had ultimately been simply unlucky. I wanted my friends and family to understand that this could just as easily have happened to them.
Now that I was on this side of the invisible glass, I realized that I, too, must have otherized sick people without ever realizing it. In this blog, I hope to ease that othering, helping both the healthy and the sick to discard the subtle veil of shame that envelops disease. Although there are many ways to reduce your chances of illness, ultimately fate can hand it to anyone. Truly, we are all in this together.
A note on my blogging style…
Just one more thing.
Normally, a blog is written in the “present tense,” like a journal. The writer describes recent experiences as they unfold, and she doesn’t have a clear picture of what’s around the bend. That’s how I first wrote this blog too.
But, as you might have noticed, it’s now written in the “past tense” —I’m describing experiences that happened in the more distant past, months or years ago. I have the benefit of hindsight. I know where the story is going.
That’s because, after writing this blog for a few years, I realized that parts of my story could be turned into a memoir about my journey with illness. I took many of my blog entries offline and began molding them into a book draft, which is still in progress. I left online the pieces that didn’t fit into the book or that made more sense as blog entries.
And I’ve edited the remaining entries to bring them up to date. This means they’re not as raw as they were when I first wrote them, but it also means they’ve gained accuracy and wisdom. I now know far more about my disease than I did when I first started blogging. I want to make sure I’m guiding readers in responsible directions, since most readers are fellow colitis sufferers. And I want my writing to reflect my current feelings and personality, which is, I think, softer and gentler than when I first began writing.
So this is an unconventional blog. The dates often roughly match the dates I’m writing about, but not the dates when a lot of the text was written. Things I wrote in the past have disappeared. New thoughts have appeared.
As you peruse what’s here, I hope it brings you comfort, insight, enjoyment, and good health. 🙂
