A Decade of Disease

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I’ve had Ulcerative Colitis for ten years now.

Geez, I feel like I sound so old even typing it, like a decrepit old woman saying she’s got bad arthritis, wringing my hands over a cold mug of tea and a worn out afghan. Yet, it’s true. I’ve had a chronic disease for a decade now, having been diagnosed at the fragile age of 22 weeks after my college graduation. And I still have it (no surprise) and much has changed since then (pleasantly surprising). It’s not exactly an event worth an anniversary party but I couldn’t help at least giving it a blog post.

When I first got diagnosed I had an insane amount of anxiety associated with my disease. I literally had a “the sky is falling,” mentality, probably because I was entirely overwhelmed with the realization that I now had a disease I would be keeping for life. Best buds, except not. I had this nightmarish picture in my head of me, married, in my early thirties with two young kids, and I was dying of cancer in a hospital bed. I realize it sounds so depressing and fatalistic but that was very honestly the future I envisioned for myself. I couldn’t see past the facts in front of me, couldn’t hear the reassurance of my doctors. I was scared to death, of death, it seems.

It took years for me to wrap my head around the concepts that young people get sick; that people get diseases that they can’t shake; that life wasn’t just unfair to me but to everybody at some point in time. I was very entitled back then, thinking, honestly, that this shouldn’t be happening to me. I had a plan and a future and this disease was throwing it all off track. I had tried so hard to be strong and then I was made very weak. Prednisone-dependent weak. I had built a life of control and now I was at the mercy of my own haywire immune system. I was taking drugs with scary side effects and I couldn’t be 100% sure that they wouldn’t happen to me. I craved some foresight, some indication that everything would be ok but I didn’t get that. It took me years to understand that nobody does. I just had to watch it unravel, like every other person in the world. And as much as I hated it, it was probably the best thing for me.

I see things differently ten years later. There is less shock around my disease, less drama, less attention paid to it in reality. It has dissolved into the background more as my life has grown and expanded. I still struggle with anxiety related to my health (now more centered around who would care for my family if I couldn’t) but I’ve settled in, so to speak. Flares will come, drugs will change, insurances will inevitably give me a hard time. (Easy for me to say now because I’m feeling fine). There is something to longevity.

The anxiety was real but so was the persistence. My faith was nearly demolished but now it’s hardened into stone instead of wax. My marriage feels like a series of deep breaths, essential, life-giving, every changing yet consistent (in sickness or in health is no longer simply a romantic platitude). I’ve birthed two children, harboring life and sustaining it, carrying them, teaching them, hugging them, all with this broken body of mine. Back then, I wasn’t sure if I would ever make it this far. It’s reassuring to see that the past ten years have proved to be significantly better than my foolish nightmare.

Sometimes I wish I could reassure that young, broken woman ten years ago. You will find a man who not only loves you despite your disease but decides to carry that burden as his own. You will have kids, two perfect ones, healthy and vibrant and more hilarious than you could imagine. You will have bad days (or more accurately bad months) but you will learn to get through them and move past them. You will be poked and prodded and have all kinds of drugs marking your veins but you won’t be inhabiting a hospital bed at thirty two years old. You’ll make it through grad school and become a NP like you hoped. And while you will have learned that life is both so much harder and better than you thought it would be, you’ll be intact. Much more whole than you are now, and that’s only in ten years.

That would be a fun experiment but I still wouldn’t have listened to myself. I was young and scared and stupid, young twenties stupid (spending my money on an overpriced apartment, brunch and concert tickets- ha!). But now I can say that Life is wonderful! And I still have colitis! Ten years ago I wouldn’t have strung those two things together, especially the exclamation points. I can drink wine again and eat popcorn. I can run and play with my kids and although they will always have that box to check on their family history, I really don’t think my disease affects them very much. Somehow, through avenues that I can’t explain, I am limping less these days, no longer held back by some of those big, giant fears. Most days, anyways.

Will I still hope for better colonoscopy prep? Absolutely (and amen). Do I have hope for a cure for IBD one day? Markedly less so, but medicine is crazy so you never know what some nerd in a lab is up to right at this very moment. Do I have any idea what the next decade holds for me? Nope. Nobody does.

But that question matters less and less these days. I’ve got more important things to take care of.

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A Collector of Stories, a Reader of People.

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Everyone who sits in the chair or lies on the bed is there to tell a story.

Some stories start with a misadventure- a careless turn taken on an abandoned road or a flailing, drunken mouth at a local bar or a pop that came out of nowhere, annoyingly enough, and is now here to stay. Some are more memorable than others- breaking a bottle of Tequila on your foot for reasons that no one can quite figure out- and some are less romantic like a contagious illness acquired from a sick kid or a bland case of persistent indigestion. Despite the circumstances, the patient still ends up in the office, led to your chair by an element of surprise. Very few people come to the doctor’s office willingly, on a good day. Usually there are wrinkles in the story. Something has to change the direction of the plot and that is the reason for same-day appointments, plain and simple.

Other stories are more despondent, predictable, birthed from the same relentless situation of getting old. Cartilage does not rejuvenate itself; knees do not grow on trees (as much as the orthopedist might want you to believe otherwise) and people are not getting any younger. No, they are not, they are definitely not. No one can cure inevitable decay, just delay it as long as your insurance will allow, and many stories are repetitions. Slight deviations from the usual, symptom-riddled routine. Tentatively turning the page of a book that may snap shut any moment.

Regardless of the reason for the visit, there is always more to be discovered in the story. Always more details and more complications and other diseases waiting to emerge on a routine set of labs. There’s always more because people are vast and endless, full of the unexpected. People are the most complicated subjects in the world and I get the pleasure of trying to decipher them. To learn to read them.

There is always more to the story.

So what is my job? To find out the particulars of the story. How do I do this? By asking questions. By gaining facts, collecting them in my mind like a child gathering polished stones. At first glance it seems formulaic and in many ways, it is. These formulas are exactly what is taught to all the students who have degrees that enable them to ask such questions. What brings you in today? When did that start? How long has that been going on? Occasionally, you’re allowed to ask a question like How do you feel? but even that is too esoteric for everyday use, a special indulgence reserved for an open afternoon on a boring day. Most of the time it’s a fact-finding mission. Does it hurt a little or a lot? Is it acute or chronic? Can you walk on it? Has this ever happened before? The questions are the title page, the introduction, the scattered highlighted portions that catch your attention as you skim through the chapters. These are the facts.

Some people only tell the bare minimum while others, let’s be honest, tell far too much. Sometimes you’ve already done a full assessment, ordered all the appropriate labs and medications, written the discharge summary and the patient is still telling you unnecessary details, much to your chagrin. That’s where practice comes in- being able to to navigate to the right details, ask the right questions, make people feel like their story has been heard, and still get them out then door feeling satisfied with the plan. You become a narrator, guiding them towards a path you think is the best course of action or leading them away from a more deleterious one, from those singed, cigarette-smelling pages at the end. Sometimes your efforts work and everyone leaves happy and on time. Sometimes you spend the rest of the afternoon frantically trying to catch up. And in almost every circumstance, the extra time is worth it because certain people need a little extra listening, to know that their story is weighty and unique and significant. They need to know that their story matters, even to you.

The real down-in-the-dirt interesting part comes when people won’t tell you some vital detail of the story, something that you know may change the crux of the plot and the direction of your diagnosis. These questions are trickier and consist of types like: How many beers do you drink per night? Would you like to be tested for sexually transmitted infections? Have you ever thought of harming yourself? I try to be an unobtrusive as possible by explaining that I ask everyone these questions and I don’t judge; I just need to know the truth. It’s even more fascinating to watch someone unweave a tale they just told you, realizing that they’ve gotten themselves in too deep. The wiggling in the chair, the lame excuses, the backtracking that has no end. Don’t get me wrong- I’m not trying to catch anyone in a lie- but those things have a way of rising to the surface when the patient is lying naked with a hospital gown on, even without my questioning. A nakedness of the soul, if you want to think of it that way.

Some people think they’re lying successfully but it’s almost always painfully obvious that you drink more than one beer a night or that you haven’t been checking your blood sugars, especially because I’ve become accustomed to patients lying to me from years of being in healthcare. (And even if I miss the deception, labs are always unsympathetically honest). People will try almost anything to get away from shame and sometimes you have to leave the visit in the discomfort that there are pages that the patient simply will not allow you to see and you must do your best despite that reality. It’s unfortunate but I cannot force my way into a story that I’m not invited to read.

It’s even more invigorating to watch someone divulge those details to you willing after you’ve established some trust. They recognize that you have to see all the pages, like an editor who must know every upcoming plot twist, and that they will ultimately suffer if they hide sections from you. They tell you their story; they let you in. They admit things that even their spouse doesn’t know, emotions that they’ve locked away, memories that made them who they are today. It’s a humbling experience, reverent almost, and you don’t forget those visits easily. Those are the lines that you memorize and hold close to your heart, the pages you reread on the days when you wonder if you’ve gotten into the right profession.

And then it doesn’t just stay their story- you enter in. You become a character and establish yourself in a scene, as a life-altering influence who informs them of a cancer diagnosis or a reoccurring character who resurfaces every so often to fix a smudge or wipe some tears and then recedes into the background until needed further. My story blends with theirs, just for a twenty minute appointment, and suddenly we have shared memories, communal pages. That is the true magic of medicine, the part that I fell in love with a long time ago. It’s the part that keeps it all so darn interesting and keeps me wanting to go back and read more. I am a collector of stories. I am a reader of people.

People never get tired of telling their stories and I hope I never get tired of hearing them, of turning pages that always end up surprising me. I am in love with the narratives of the people who wander in to see me. I am infatuated with being a part of a bigger story than my own. I am a nurse practitioner (or at least well on my way to being there) and a storyteller at heart.

And, strangely enough, I have figured out that those are really the same thing.