ImproveCareNow Jennie_david


Not Sorry

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As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 


Engaging Children as Special Populations

I was invited to a PCORnet talk on Building Trustworthiness in late March 2016 where I was asked to discuss children as a special population. My talk, which I’ve shared below, examines how ImproveCareNow engaged pediatric patients in a way that moved beyond the token role often lamely offered to children, and the powerful ability for patients to be involved in and generate meaningful research based on questions important to us as a cohort.

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New Co-Chairs to Lead the PAC

IMG_2301Outgoing Patient Advisory Council (PAC) Co-Chairs - Jennie David and Sami Kennedy, who co-wrote "What We Wish Our Parents Knew" - have announced their successors! Alex Jofriet, who is committed to turning his Crohn's diagnosis into a light for others to follow and Bianca Siedlaczek, who is excited to continue her patient advocacy career with ImproveCareNow. Keep reading for personal introductions from the new PAC co-chairs!



Meet Alex Jofriet!

 

Alex Jofriet in the ICN Superhero cape at Spring 2015 Community ConferenceHi, my name is Alex. I was diagnosed with Crohn’s Disease at age nine. It took many years, about eight after diagnosis, for me to find remission. At diagnosis, I was one of those shy, studious kids who sat in the classroom, mostly invisible to my peers and I liked that. My diagnosis of Crohn’s Disease threatened that invisibility and it took me about five years to accept my disease and open up about what I was going through.

 

Now, looking back, that seems like long forgotten history as I have gone from wanting to be invisible to being involved in many advocacy endeavors. My involvement in advocacy led me to ImproveCareNow (ICN), which I have been involved in for the past 4 years. What has kept me involved with ICN is their focus on the whole IBD patient. As co-chair, I hope to add to this "whole patient" focus by increasing the amount of peer support for patients in the network through a universal mentoring system. I am appreciative of all ICN has done and continues to do and am super excited to get started!



Meet Bianca Siedlaczek!

 

Bianca with her osotmy bag out and the words Hi, my name is Bianca! I was diagnosed with Crohn's Disease about 7 years ago, when I was 9 years old. In the past 7 years, I have been through many hospitalizations, many flares, one surgery, one year of remission, and much more. Every one of my experiences with Crohn’s Disease, through the years, has facilitated the growth of my passion for being a patient advocate. Over the past year and a half, ImproveCareNow has given me the chance to fulfill my passion for being an advocate. From the beginning, when I came to my first Learning Session with my center in Michigan, I  loved what ICN was doing to improve patient care and how the network went about doing so.

 

I look forward to transitioning from being a patient scholar to becoming one of the Patient Advisory Council’s Co-chairs. I am beyond excited to take this next step in my “advocacy career.” I cannot wait to continue working alongside the many centers involved with ICN and ICN’s staff. To say the least I am very excited to get started!

 

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The Patient Advisory Council (PAC) brings together patient advocates in ImproveCareNow as partners to create a network for pediatric IBD patient engagement. They create, co-create, and advise the creation of innovations to facilitate improvement in pediatric IBD care and quality of life for children and young adults living with IBD. The PAC welcomes passionate young adult patients (14 years and older) to join. To learn more or join please email pac@improvecarenow.org

 

 


Inspiration on tap - Jennie's Speech

Out of all the talks at the ImproveCareNow Spring 2015 Community Conference none made my heart beat a little faster quite like those delivered by Patient Advisory Council Co-chairs Sami Kennedy and Jennie David. The ability of these two ladies to shine a light directly at the heart and soul of ImproveCareNow is uncanny and uplifting. I challenge anyone reading this, Jennie's speech, to not break into a face-splitting grin (and/or run right out to change the world).

 

For anyone momentarily struggling with the thankless monotony of changing the healthcare system - I would prescribe the following: read a speech at bedtime and resume improving care now in the morning. Repeat as needed for maximum benefit.

 

They're a bit long so I've shared Jennie's speech below and will share Sami's in a separate post. Enjoy!

 

 

 

 

 

Jennie DavidThere is a cold tradition in medicine of an unaccommodating hierarchy, where the doctor is installed as the superior and the patient as the inferior. Under the mechanical demeanor of navigating such medical appointments, the whole thing – being exclusively a patient or a doctor, sick or healthy, needing or giving – seems ridiculous and illogical. Outside the sanitized walls of the hospital, I am a person complete with hopes and fears, and yet inside a hospital room – moreover, on an exam table – I am a specimen of my disease, a list of medications, a compilation of surgical scars. There’s a marked lack of apologies or prerequisites for doctors to perform examinations, ask invading and uncomfortable questions, and inflexibly dictate treatment, the flimsy but bold idea that it was all just ‘good business’ woven throughout it all.

 


I fought against this notion of paternalistic care throughout my pediatric care, routinely clashing with my doctor, the tense encounters punctuated by his passive aggressive sighs and sometimes me crying. I believed in the idea of doctors, patients, and parents working together, but it was much like a wish over birthday candles than anything I knew existed in reality. I kept this starry-eyed but unrealized medical vision in mind, and was consistently underwhelmed and disappointed in medical care that failed to detect my soul within my diseased body as the years swept by.

 


And then I – quite literally – stumbled across ImproveCareNow. Admittedly, I was enchanted with notion of such a collaborative network, but it somehow seemed too saccharine, too futuristic, too implausible. Having been a patient advocate for several years before discovering ICN, I was used to fulfilling the token patient role, saying token patient things, and – ultimately – doing the limited token patient things. But there is nothing token, ordinary, or suffocating about being a patient advocate within this network. This network is filled with sincerity, generosity, creativity, curiosity, and a desperate and passionate drive to improve things right this very moment for children and families living with IBD. The insatiable appetite for research, quality improvement, and innovative collaborations was infectious, and – while I can remember the extensive exhaustion after my first Learning Session – what I remember more is my heart racing with excitement realizing the remarkable gravity the network can have on pediatric IBD.

 


New traditions began to solidify: being asked for my opinion by established researchers and the allowance of a pause to actually absorb and respect my answer, the verbal and instrumental encouragement to actualize projects I’d dreamt of, being on a first name basis with clinicians I was so starry-eyed around that I had to force myself not to ask for autographs on manuscripts, and having an undisputedly important place at the table in the conversation for the evolution of quality, patient-centered, collaborative care. I also have to acknowledge the wealth of community-driven traditions: suitcases packed to the brim with candy, repurposing Taylor Swift’s “We’re Never Ever Getting Back Together” as an ode to my long lost colon, and corralling clinicians to take pictures with Flat Jennie.

 


The words “thank you” will never be enough, and I know that, and wish I could come up with some brilliantly poetic phrase to aptly articulate my profound, profound, profound gratitude. I am thankful for the collective kindness of everyone in this room, the extraordinary opportunities that have been so undeservedly yet continually offered, the patience, humility, and willingness to listen to my ideas and experiences, the faith that has been loaned to allow projects to develop, and the utterly bottomless generosity afforded to me that I have been so unimaginably honored to have received.

 


“Thank you” is not enough, in part because it is not, in and of itself, action. Instead, I will promise this: I promise to embody the spirit of ICN as I move throughout my psychology doctorate training, when I enter the field of pediatric psychology as a professional, and with every human being I encounter, be it in the hospital or on a street corner. I promise to play a role in the cultural revolution that is innovative collaborative care, to be proud and firm in constructing the values-informed medical traditions of tomorrow, and to help set the world on fire with the formidable (onerous) but righteous idea that clinicians, patients, and parents should stand shoulder to shoulder in medical care.

 


I have seen and felt the unparalleled power of this network, I have witnessed how kindness changes the world, I have been so humbled, fortified, and impassioned by sharing the vision of collaborative, personalized, and humanistic medicine with all of you. It is a cultural revolution, it is a new tradition, and it is something I am so very, very, very honored to have been a part of.


The Moment

Jennie at the Finish LineI can very clearly recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”

 

It felt like getting out of a pool and putting on layers of clothes without drying off – I was wholly uncomfortable and couldn’t shake the feeling that something was wrong. There’s a concept in social psychology that says sometimes we feel a kind of transparency with those around us, which is to say that we feel others ‘just know’ things. For example, if you are walking around with $500 in your pocket, you have this sense that others ‘just know’ you have money on you and probably guard your pockets a little more. In my case, I had this unsettling feeling that people ‘just knew’ I had Crohn’s by merely looking at me.

 

The problem was that I didn’t want to be that person. I wanted to be the girl who danced ballet and was a big sister and was learning to scrapbook. Being called a patient was a misnomer, and I thought the assumed identity swallowed me whole.

 

But then there was another moment.

 

After slowly acclimating to the world of IBD awareness and fundraising via my parents and our family’s participation in a handful of local events, I was invited to speak to a group of sponsors. I was 15 at the time, and my Mom picked me up at lunchtime from school to take me to where I would be speaking. Admittedly, I was nervous and kept unfolding and folding my speech.

 

The room was full of important businessmen and women, all formal in their suits and shiny black shoes, and there I was, just a 15 year-old in a room full of adults. One of the fancy businessmen gave an introduction about me, and called me up to the podium. I unfolded my speech and began to talk.

 

As I started my speech, I noticed everyone was paying particular attention, their heads tilted to the side, their hands still on the tables. They were paying attention to me. Suddenly, I was an advocate. Not because I was speaking to a group of sponsors, but because I understood the power and gravity of my story and how to include others in my pursuit for better care and compassion for those living with IBD. I was no longer “just a 15 year-old in a room full of adults,” I was an advocate, and that transcended age. Despite their 30 plus years on me age-wise, I was teaching them something about what it meant to live with a chronic illness.

 

I am no longer worried about others ‘just knowing’ that I have Crohn’s. I am empowered and impassioned by my experiences as a patient advocate, and seek out opportunities to educate others. Being a patient advocate has transitioned the ownership of my disease from my doctors and parents to myself, which came with the realization that I – like everyone else – cannot simply be one thing.

 

Now, instead of feeling embarrassment and discomfort at the idea of being associated with others with my illness, I feel a sense of honor and gratitude towards other patient advocates who have chosen to use their pill bottles as soap boxes in sharing stories to effect change.

 

Because as the saying goes, lots of little voices together create a very loud chorus.

 

Jennie


DIGMA: Group Medical Appointments

In the decade I have lived with Crohn’s Disease, I have steadfastly steered clear of support groups. It always seemed as though I were resigned to a couple of options in talking about my Crohn’s: 1) stick with my private medical appointment with only my parents and doctor, or 2) cautiously venture into the mysterious world of support groups. I exclusively favored the first option, and carefully built my community of friends with IBD a la patient advocacy and volunteering. And while that strategy worked for me, I only recently realized there’s another way.When Sami and I were invited to participate in the Children’s Hospital of The King’s Daughters (“CHKD”) team’s demonstration of the group medical appointment (better known in the medical community as Drop-In Group Medical Appointments, “DIGMA”) at the ImproveCareNow Spring Learning Session, we were happy to help. We were admittedly unaware of how a DIGMA session worked; and arguably incredibly naïve about the feasibility and sustainability of a model that – at first glance – seemed to be the very kind of ooey-gooey-woe-is-me support group we had intentionally evaded.

 

Children's Hospital of The King's Daughters at the Spring 2014 Learning Session during their DIGMA demoChampioned by the passionate team at CHKD in Norfolk, Virginia, the DIGMA model has enjoyed strong support from clinicians and families alike. Dr. Marc Tsou was introduced to the idea in the late 90’s when a parent gave him an article about the group model structure, about which he says, “It seemed to make so much sense. I thought of how many times in the day I’d say the same medical information to several families. Say that information six times, how inefficient, then think about how much that group appointment concept makes sense.” Dr. Tsou saw an opportunity to meaningfully build on the clinic’s collaborative culture; “Elements were there, the right type of people and group. The doctors were the ones who said we’ve got to do this, we’ve got to do this, the time was right, it was almost fate.” Fueled by his fearless nurse, Terri, Dr. Tsou and the CHKD team set about bringing the DIGMA model to their IBD families.

 

The first step was reaching out to a variety of clinicians – such as dieticians and social workers – to ensure that the group visits did not just include patients & families, but also a group of diversified care providers. After sending out an email to potential clinician participants, positive responses began to rush in. “For the most part all responded and had someone to come and participate,” Terri says. “Everybody was super receptive to it, they’ve showed up at every one since.”

 

Annette Kulzer, a mom of three boys including 16-year-old Kolin who lives with IBD, has been instrumental in running the group model appointments. “As a parent,” she says. “It opens doors to meet people we would have not met. If we were in another setting, we wouldn’t hear those stories.” An early adopter and believer in the DIGMA model, Annette has regularly provided a parent’s perspective into how the group appointments run. For example, after a group appointment with female and male patients, Annette suggested having separate groups for each gender and for different ages ranges to encourage comfort and participation. Annette and Kolin emphasize the sincerity of Dr. Tsou’s malleability in running the group sessions, and they always appreciate the weight their feedback holds.

 

In addition to the accessibility to a variety of clinicians and retaining certain elements of the traditional solo medical appointment (e.g., a one-on-one physical exam), the DIGMA model had a surprising but welcome impact; it provided novel insight for patients, parents, and clinicians alike through storytelling. Annette remembers a teenage patient who recounted having great difficulty taking the bus to sporting events with her teammates, since she was worried she might urgently need to use the bathroom. The story challenged Annette to reconsider Kolin’s hesitation to ride with his teammates to a game, as she came to understand that her son – who rarely complained – shared a similar fear that had gone unspoken.

 

Jill, CHKD’s social worker agrees that sharing stories can be incredibly eye-opening, and says, “It’s very, very different when you can look into the face of another mom or another dad or another kid, and say I understand this. Okay here’s somebody like me, they’re doing alright.” Dr. Tsou adds, “There was one mom who broke down into tears, she got very emotional, you think gee these sessions no one will share very much, but really they’re sharing their souls and baring their deepest fears. People might be skeptical but it really happens, but that’s super gratifying, a bit surprising, and confirmed to us that we’re on to something and something that deserves the attention and energy to keep it going.” When asked about group session attendees who were unsure at first, Annette says, “We’ve had many patients and parents who come in resistant, but within 15 minutes they’ve had the Kool-Aid.”

 

The group session can also be liberating for patients, who perhaps fear that IBD will be an “albatross around their neck for the rest of their lives.” Kolin enthusiastically agrees, adding, “Telling people what you’re going through helps a lot.” Positive and on target support grows organically from the patient-driven and clinician-facilitated model, and Kolin says, “You’re going to get so much out of it.”

 

While the organizational burden was heavy at the beginning, the team has happily tackled logistical issues to provide this innovative practice to their patients. Dr. Tsou explains, “The group appointment allows for so much more sharing of feelings, fears, and that’s really what so many families want and need and it allows it in the framework of still providing care. We’ve all had to learn a little different way of doing it.” Terri adds, “No harm in trying something, and I would guarantee that if others tried this model, they wouldn’t go back, it really does impact patients and families.”

 

But the potential of the DIGMA model doesn’t stop there: the team sees practical applications to rural communities (i.e., being able to run a group session in a rural community to maximize patients who can be seen), and across medical specialties. Dr. Tsou says, “I think it’s going to be more mainstreamed. It is the way medicine will be practiced in the future, we’re at the leading edge of it, which is cool.” Kolin adds, “I really want it to spread. I was really skeptical of it at first, but I really do enjoy the DIGMA model.”

 

A group medical appointment is, at its core, a treasure chest for patients, families, and clinicians; the ability to offer a holistic, patient-centered, and team-approach to pediatric care is innovative and vital to the collaborative and transparent culture championed by ImproveCareNow. The passion, integrity, and dedication the CHKD team has for optimizing chronic illness care is not only evident, but most importantly completely contagious. “We’re all passionate about our patients,” says Terri. “We were born to do this, it’s been really wonderful. Everyone had the spirit, it was right for us.”

 

 Jennie


Drum Roll Please...

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

 

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

 

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

 

Spring 2014 ImproveCareNow Learning Session

 

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

 

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:





    • PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

 


    • QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

 


    • Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

 


    • The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

 


    • Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

 


    • The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.



We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

 

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

 

Jennie + Sami


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


Together

I met with up an old friend for tea. As we were standing in line, she asked about my college friends and how they were doing. I started talking about one, and she interrupted, asking, "Is that the girl with Crohn's?" "No," I said, and named another disease. My friend smirked, and said, "Do you have any healthy friends?"

It's an ongoing joke amongst my family and closest friends that, in order for me to know someone, they have to have a chronic illness. To an outsider examining those I have chosen to be 'my people,' it would indeed seem that having an illness is some form of a requirement - the vast majority of my close friends have chronic illnesses. The natural thought is that we're friends because of being young with chronic illnesses, but that is not completely true.

They did not choose me because of my illness, or in spite of my illness, but rather they chose me with my illness. Living with a pediatric chronic illness has been, in my experience, a simultaneous growing up and growing down: the growing up is bumpy and circuitous, while the growing down is shirking off the medical maturity and fumbling to fit in and understand peers without disease. I have several wonderful, empathetic, incredible friends who - surprise, surprise - do not have chronic illnesses, and these people have been unimaginably understanding, supportive, and encouraging. But, in light of a variety of challenges my friends with chronic illnesses have been facing, I wanted to write this post in explaining the beauty of a friendship steeped in chronic illness.

To my friends with chronic illnesses:

Thank you -

For understanding that when I say I'm having a 'bad day,' I'm really not feeling well but trying to be brave. For sending me funny pictures and sweet cards in the mail. For never replacing true empathy with an easy platitude.

Thank you for seeing the strength in my struggles, the determination in my pain, the resilience in my scars. For knowing that I am not my disease, but like a tree with a missing limb, I am whole even if my body is not.

I am better for being your friend - better for sharing my story with you and better for listening patiently to yours. I am so full of everything good because of your willingness to hear me when I'm terrified and upset, to celebrate my triumphs when I push on, to let me have a moment of fear before you tell me I can do anything.

We are not friends because we are sick - it may be how we found each other, but we are friends because we are puzzle pieces that click together, choruses to the same song, hands that were meant to hold the other. I look at you and see you, not your disease, not your pills, not your doctors, not your prognosis. We see one another when sometimes everyone else can only see the mask.

I hurt when you hurt, but I will always be there for you, just as you are there for me.

This is a thank you, a celebration, a marking of how much your friendship means to me. Words will never do this justice, but I wanted to try.

For now and for always, thank you.

Jennie


Words Into Action

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

 


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