It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.

Within minutes, I went from sleepy and calm to sobbing and furious. I could hear myself talk, I could hear the escalation of my voice and the rising tremor as I began to cry, but no one was listening. Everything I said was countered – I said, “I want to go home,” and the doctor would say, “Yes, but…” and I would say again, demanding this time, “I want to go home,” and the doctor would repeat, “Yes, but…” Finally I broke eye contact with him, my voice boiling higher and higher, and instructed him just to tell me what he wanted since I clearly was not making my point. “Do whatever you want,” I said, “You just make a decision for me and stop pretending like I have a say, because clearly I don’t. Just tell me what you want me to do.”

I am someone who believes in the patient voice, in working with doctors, in pushing for what you think is right, in being persistent. What had happened to that girl and who was this person, someone who just threw her hands up and willingly handed over her decision-making rights to a doctor she’d never met?

It is very easy to talk about change and use wonderful terms like “patient-centered care” and “shared decision-making.” It is easy, and often it is done with the best of intentions. It is much more difficult, however, to put these things into practice alongside busy lives and complicated patients. How do you achieve patient-centered care and shared decision-making with a patient such as myself, one with refractory disease who has ‘failed’ every traditional medication, has already undergone aggressive surgery, and who sits in front of you on her hospital bed, legs folded, eyes blurry with tears, asking you for the rest of her life, and all you can offer is another fluid bolus. What happens then?

In some ways, it was easier as a pediatric patient when I was not responsible for my care in full. And even though now I have legal rights as an adult patient, to decide what I think is best, in upsetting and frustrating situations I do notice myself defaulting to needing my parents. I find often my doctors are talking directly to my parents and forgetting that I am there. And, like that Monday, sometimes I feel like I have no power or ability to direct my care.

For me, there is an incredible and palpable dissonance between sentiments expressed about chronic illness care at ImproveCareNow Learning Sessions and in my own adult medical experiences. The system at play in many adult hospitals is, in various ways, broken and offbeat with patients – nevertheless, it functions ‘well enough’ that it’s left untouched, unchanged, unaffected by the gleaming and exciting collaborative thinkers just an arm’s length away. As someone who has been steeped in medical decision-making literature for the past several years, it feels appalling and shameful to admit that I hand over my care with such frustration and carelessness as I did that Monday. And yet, I’d also like to think that it exemplifies the sheer monstrosity of the challenges and barriers for patients who aspire to be involved in their care. Is that truly such a futuristic ideal? Is there really not room for me in my own care? As a young person with a chronic illness, I have found these types of encounters to be ineffably defeating and disenfranchising – to have to defend yourself, your beliefs, your values, and your preferences to every person in a white coat is offensive. It is as if the doctors claim ownership of your body, as if they can scrape your soul clean, fix your body, and then hand it back to you, as if a disease is your life versus a disease happening in the context of your life.

So what then am I saying about the young child in clinic, who will sit on your exam table, crinkling the thin paper as they climb up? What does all of this have to do with them? Firstly, it is your job – moreover, your responsibility – as clinicians and parents to empower that child in her medical care, to cheer her on, to apply an unwavering commitment and determination in helping her achieve her goals and ambitions. Even though a child does not have the legal ability to choose, there can always be small decisions for them to make (e.g., “Do you want the needle in your left arm or right arm?” or “Which bandage do you want?”). Secondly – and I wish I could say this to every person face-to-face who is reading to convey the seriousness and weight in this – young patients will grow up and will one day be adult patients. Two of the best strengths you can foster in these children are a conviction for medical advocacy and an unbreakable spirit to defend what they believe in. It may sound insignificant or small, but by always instilling a belief of ownership, we are opening the door to true participation in health care.

Because if we don’t tell them, who will?

Jennie

 

After a morning GI appointment, my mom wanted to get a coffee before she took me to work. We drove to a local coffee shop and I decided to go in with her to grab a tea. We placed our orders, paid, and as we were leaving, I caught a glimpse of a customer sitting at a table and suddenly recognized him.

He was a clinician from my pediatric hospital – someone I had always thought of as particularly kindly, someone who had incredible bedside manner and a great comfort in speaking to me, and someone who I hadn’t seen since high school. Since I knew I would regret it if I didn't, I walked over and said hi. He promptly hopped up from his chair, reaching out his arms for a hug, and asked how I’d been.

It was this funny moment in which I was no longer a child or a patient but just someone else in a coffee shop - grown, with a hospital ID badge slung around my neck. He couldn’t believe how old I was – “How is it possible you’re done college?” – and grinned at me as I caught him up on my life. I had sent him pictures after I hiked Machu Picchu. He said he’d been to Peru since and thought about me, trying to notice any similarities between my pictures and the Peruvian surroundings. When I told him about graduating with double honors and wanting to pursue a PhD in clinical psychology, he looked at me, smirked, and said, “That does not surprise me one bit.”

He said he was going to a meeting with some of my other former clinicians, and asked if he could pass along the full update on me. Of course I said yes, feeling a little like a movie-star that people cared what I was up to. He will always be one of my favorite clinicians. He made me feel as a kid – and in our short coffee shop interaction – like a whole person with more to offer the world than an over-sized medical chart. I believed in myself not only because my parents were supportive, but because at my sickest I had clinicians like him who saw beyond the medicine to the person.

Monday was my first day back to work after a two-week hospital stay. I walked into my office, collected hugs from my lovely co-workers, and set about logging onto the computer and catching up on emails. The fabulous boost of seeing that clinician in the coffee shop stayed with me. At one point during the day, I saw a patient for one of our studies. He was a gentleman in his 70’s and was in the surgical clinic with his wife. Before I stepped into the room, I made sure to look through his chart and get a sense of who he was – not just what surgery he was having – so I could be engaging and receptive to him as a person and not solely as a patient. I had the loveliest conversation with him and his wife, going out of my way to be open, respectful, personable, and accessible. For example, in going over the study questionnaires, I wanted to be transparent and would turn the page around to show him and his wife what the pages looked liked, explaining what I was asking and writing down so that it didn’t seem secretive or hidden. He would laugh and noticeably relax, and as they saw me throughout the day, our relationship continued to grow so that when I see him after his surgery, I will be a familiar face.

This perhaps seems silly to write a post about. But this is what I hope you've read between the lines – the person inside the patient matters. You never know who’s sitting in front of you, because it’s never just a person of a certain age with a certain disease. Especially in pediatrics, your patients are like caterpillars waiting to become butterflies – you have future doctors and advocates and economists and dancers and athletes and poets in front of you. You have children who are blossoming into themselves, with diverse talents and abilities. As clinicians for children, you have a unique opportunity to build and strengthen relationships with them as they grow emotionally and physically. Your patients will never forget you – good or bad – but why not make the memories they carry with them about how much you supported them?

Because who knows, you just might run into them in a coffee shop one day.

Jennie

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I've carried with me since: "As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen."

On Saturday mornings, I work as a child life volunteer at Arkansas Children's Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I'd like to be a friend - a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

Saturday morning, I met Tyler (name changed) who didn't look like he was having the best day. He was eight and hanging out with his video games, but I've become pretty good at distinguishing bad day faces from good day faces - and this was a bad day. I crouched down by his bed and did a run-down of "my collection" in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It's a kind of magic all its own, but one that anyone who works in a children's hospital should recognize.

"Hey Ty, I have an idea." He looked up. "I can bring you some paper to paint." He nodded. "But do you like to paint other things too?" He looked at me funny. "Well, sometimes, I let kids I really like paint my face." This is technically a lie - only one other kid has painted my face in the hospital (his hilarious doctor's idea actually) - but Ty didn't need to know that.

Ever seen a YouTube video where a kid is asked if they'd like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn't expect quite such a dramatic response.

His lunch came right at that moment, so I excused myself to finish up my rounds - and encouraged him to eat up. I'd be back soon, and he had work to do then.

Thirty minutes - and several delivered board games and art supplies - later, I was back in Ty's room. "Ready, bud?"

I'm about to show you what happened next - but the best part, and what I can't adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk - or out to the unit hallway, if you'd prefer to call it that - to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

I asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children's hospital. Isn't it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I'm here not just for me, but for every patient - your patient. I represent, but I'm last. I know it's a sentiment that Jennie and I share, and the code by which we work.

I've stopped trying to guess what's ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I'll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want "my kids" to feel brilliant.

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

Hey.

Breathe. I know you want to scream right now, because it hurts so bad. I'm sorry.

I know you struggled to sit through that presentation. I know you didn't leave because you were afraid you'd get in trouble. You didn't want to be embarrassed. You wouldn't know what to say. You have diarrhea and it's really bloody, and I know that scares you. I know there's no way to say that easily, so you keep quiet. Some days, it's just blood. I know you wish you could talk about it. One day, you will.

I know you're scared. Scared that next time, you won't make it. Scared that the line outside the stall will start to get impatient. Scared that everyone will notice it's you giving off that smell. I know you wish you had more hands, so you could plug your nose, grip the rail, and hold your aching belly at the same time. I know you worry that one day, the pain won't pass, and you won't be able to wipe and stand up and just leave. You don't know what you'll do then. You're scared to look down, afraid of what you'll see. It's getting worse. The doctor said it would get better. I know it doesn't make a lot of sense to you now. You're eating only the most basic foods. It's a bagel every day for lunch, maybe white rice and a banana for dinner. You're staying hydrated before you run. That was supposed to make it all better. No matter what you eat, the pain makes you moan and cry and scream, but you know you get through it every time. You're going to get a break soon. It will be okay.

You're going to face something even worse than that pain, too. Bad doubt, worse than the worst of your pain. It will hurt you more than anything. Trust yourself. Your pain is real, and you are not weak. You are loud and smart and spunky. Be that girl, even through the pain. I know you think letting people do nice things for you will make you not-a-grown-up, but let them. It's not baby-ish to need a hug or do a silly craft. Keep that in mind...say, two weeks from now. That was a hint. Hey. Really. You're being more of a grown-up than you know right now, even right within that stall.

I'm sorry. I'm sorry that the field trip you've been anticipating for months had to go this way. I'm sorry that you couldn't eat at lunch. I'm sorry that when you get on that school bus to go home, you're going to sit alone and lay your head against the window, clutching your stomach, wincing with every bump in the road, hoping you see the school before it's too late. I'm sorry that when you go to track practice, you're going to be the last runner to cross that finish line again. I'm sorry that you're going to have to keep running all the way inside to the field house bathroom. I'm sorry that you're going to have to get back in a car to go home. And come back tomorrow to go through the pain and confusion and loneliness again. I'm sorry that you haven't had the normal freshman year you so badly wanted.

I know you're not wondering why you, but you are wondering why, and I am sorry that even I can't tell you that. No one can. But, one day, you are going to dream of finding the answers to questions you don't even know to ask yet. You are going to read books and hear stories about cells and pathways in your body that sound too incredible to be real. But, they are. And you will love those stories so much that you will want to learn every detail of those stories and write your own, too. You will have dreams you cannot even fathom yet. Dreams bigger than the stories and bigger than the pain.

I know it bothers you that I'm apologizing. I know if you were feeling better, you'd probably even be angry that I'm being so unclear about everything. This is our story, and you have to live it out to become me. Believe me, you'll like who you become. I'm sorry that you have to feel this pain, and that it's worthy of a letter, but know this: one day, you will speak about this pain, and the crowd will stand up and applaud, and it will be one of the happiest moments of your young life.

Hey. Don't look down. Just this one time. You know what's there. Look up. You don't know what's ahead yet or even what your problem is, but one day, you're going to be part of the solution. I know.

This past week I took part in the Cincinnati Take Steps walk for the third year in a row. Each year we design a new shirt as a way to come together as a team. This year’s team shirts were superhero-themed; the team name merged with the superman symbol. Seeing the sea of purple at the walk and all those superhero shirts got me thinking about my heroes and how they have helped me cope with my disease.

What makes someone a hero in my eyes?  They need to inspire me.  They should make me think beyond what’s normal and make me challenge the status quo.  Heroes change the perspective. They do not let limitations stand between them and what they want to do.  One of my heroes is Alicia Lang; she lived most of her life with Cystic Fibrosis. She was in the hospital for weeks at a time and half of her lifetime. Yet she always had a smile on her face and did not let her disease stop her from helping others. I met her at the Cincinnati Children’s Hospital Patient Advisory Council. She would roll into our meetings every month and you could not help but feel her presence in the room. Now the PAC meetings feel emptier without her smile. She lost her battle with Cystic Fibrosis, but her influence lives on.  She taught me that the tough times are the best times; it is a time for kindness, a time to step it up a notch, a time to smile, and a time to be a hero.

Heroes also inspire.  Jennie David and Sami Kennedy are two other inspirational heroes.  They inspire others by spreading their story.  They help others through their own fight by sharing their experiences; sometimes this is with humor (sharing opinions on what toilet paper is the best), other times sharing their experiences while going to college.  They have set high expectations for themselves and have made a lifelong goal of helping others with IBD. They have taught me that I can talk about poop as much as I want to, and that no matter how high the goal I can achieve.  They have taught me that, despite my Crohn’s disease, going to medical school is not out of the question; and that I am not going to accept anything less than a life as a pediatric gastroenterologist.

So why this blog about my heroes? Heroes are everywhere. They can be your Mom or your Dad, they could be someone that helps you at school or someone that you meet through circumstances that bring you together to fight a common cause.  In this virtual world, they could be a person you’ve not met face to face, but you admire from afar. Heroes are people you can look up to and can help you get through any situation. For me, when times are tough, I just think about all the people I know, my heroes, and those who may have it worse than me. I think about their situations, the experiences that they have shared, and I am thankful and mindful that my situation could be a whole lot worse. Every night I go to bed listening to Zach Sobiech’s song, Clouds, and I think to myself how I can live the next day to the fullest. How can I be a hero?

Everyone needs a hero so go out and find one. The hero you have always been looking for could be right in front of you.

I’m a health care researcher interested in making health care work better for kids with chronic illness.  My sister has Crohn's disease and my daughter was just diagnosed last year with Crohn's disease.

Twenty five years ago, my sister was diagnosed when her intestine burst. Her bowels were so obstructed and inflamed, that they started leaking into her abdomen. After her first surgery, she found kind and wonderful doctors. My parents did everything they could for her. But her journey was rough. She ended up having three surgeries, a TPN feeding tube, losing all but 3 feet of her small intestine, and having way too much physical and emotional suffering. She never took her meds because she didn’t think they did anything for her. She felt completely alone and was convinced no one could help her.

Because my daughter is part of ImproveCareNow, her experience has been different. She was connected early on to other kids her age with Crohn’s. She learned how to track her symptoms so she and her doctor could determine that her meds were helping. And she collaborated with her doctor to figure out that Carnation Instant Breakfast helped reduce her fatigue. I’ve connected online with other parents for ideas about how to help and have shared this information with her doctor. Things aren’t perfect, but my daughter has been able to bear the burden of Crohn’s more lightly, in large part because of the way that ImproveCareNow has enabled us all to be more active partners in helping her stay healthy.

Taking ImproveCareNow to the next level is crucial.  I want to make a world where everyone can be part of the solution.  I intend to continue to work to make it easier for more people to make a difference for their health or the health of their children.

Michael

Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

Jennie

[Editor's Note:  IBD is definitely not always guts AND glory...sometimes it's just guts...and as Jennie puts it - disobedient guts.  Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it's also important to stay real.  And it is a very real challenge to live with a chronic illness each and every day - physically and psychologically.  Read Jennie's musings about her most recent Gutsy Generation post, titled "The Shield".]

My blog posts usually focus on living well and living large with IBD - my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.

Why the change in attitude? Being vulnerable and exposing your scars - literally or metaphorically - shows that no one is perfect, everyone struggles, life is hard and it's about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like - it's normal and in so many ways it's what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It's like buying a map to get to a different city but having the car break down on the way - it's critical to support mental health alongside physical health in flares and remission.

It's not that it's 'all in your head' by any stretch of the imagination, it's that it's impossible to tease apart psychological health from physical health - anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the 'outside in' (i.e., doctors and researchers), but from the inside out, where patients can stand up and say - without shame or embarrassment - that they're struggling and need help. This is a way we can truly improve care now.