Connected Health Symposium 2012 Part 1: Where Are the Patients?

I was so fortunate to have been given the opportunity to attend the Connected Health Symposium in Boston on October 25th and 26th courtesy of a free pass from the WEGO Health Press Corps, and I would like to begin this post by telling you how grateful I was to be there. I watched Stanford Medicine X live virtually from my bed late September, and wanted nothing more than to be in that conference hall, experiencing the positive energy from the collaboration and discussion between patients, health care providers, and health start ups, so I jumped at the chance to attend this symposium barely 25 minutes away from my dorm. The tag line of the symposium was, “Where Innovators in Health Care, Technology, and Communications Connect”, and I was thrilled to be able to be a small part of the “Communications” contingent present at the conference as a “blogger”, as I began to have to introduce myself.

I didn’t begin my day Thursday introducing myself as a blogger; after all, 13 posts on a WordPress site does not a blogger make, and I felt I better belonged to the unspoken Patient category, so that’s what I called myself. I told a JD/MBA student and a fellow undergrad that I was there to blog about the conference and live tweet it to my fellow ePatients, and their faces fell. I could tell that they weren’t interested in that part of my story, so I quickly moved on to the WEGO Health aspect. The graduate student eventually did ask about my ePatient status, and I had the opportunity to explain what I had learned from MedX tweets and live coverage: an ePatient is “a patient who uses the Internet to gain information about their disease, and uses technology tools to aid in coping with their disease” (definition lengthened from an extremely helpful tweet from @HurtBlogger). I have to admit that I wasn’t expecting their stunned reaction – I thought the idea of the ePatient was well-known in the ehealth care world, but when I continued to get blank stares from the next five people to whom I explained the term, I started to understand what I was up against. No one inquired about what made me an ePatient (i.e., what kind of patient I was), which was surprising after having announced that what I do is talk about my illness online, in public!

It wasn’t even 8AM by the time I figured out that I wasn’t surrounded by likeminded ePatients and health activists, and as I settled into my seat at a table for the opening remarks, I started to reflect on my role as a patient-turned-blogger, and decided to proceed as both: I decided to tweet not just as a health activist but also as a person who has a stake in these conversations about the future of health care (I have discovered that the “blogger” and “patient” facets of me are inextricable: they each make the other better, for after all, what would I have to blog about if not being a patient?!).

Stage at the Imperial Ballroom at the Park Plaza Hotel, where the keynote speakers gave their addresses.

The first keynote address given by Juan Enriquez centered around the “Missing Measure” of health care: we need to measure the cost of imposing unnecessary regulations on drug advancements in terms of the number of lives that could have been saved while the FDA stalled new research. One of the more compelling examples he gave was about vaccinations. He remarked that producing effective vaccinations was not particularly attractive from a big pharma standpoint (if you immunize against diseases then people will stop needing care for that particular disease), but doing so made perfect sense from a societal standpoint. This opening address touched on one of the main themes of the day: Big Pharma versus society.

The second keynote from Dr. Sherry Turkle hit close to home when she discussed the “I share, therefore I am” sentiment of many social media devotees these days. The phrase refers to those who cannot feel an emotion before sharing it; it’s as if the act of sharing one’s feelings via twitter or Facebook legitimates them in one’s mind and body. We’re being shaped by the technology we’ve created, she remarked, adding that we’re hiding from each other even as we are constantly connected to each other: “Everyone’s in their own bubble, furiously connected to keywords and technology.”

I would like to add a positive spin to her mostly naysayer’s view of the capacity of technology to bring people together: instead of separating people who would otherwise interact face-to-face, technology (be it twitter, Facebook, Skype, or even gchat) unites people who would otherwise be unable to interact face-to-face, especially in the online patient community. Online interactions help relieve the pain of loneliness some chronically ill patients endure because they are too ill to leave their beds by connecting them to the world outside their own minds, and allowing them to share their problems and feelings with people other than their caregiver(s). This facet of the online community was not addressed in Dr. Turkle’s keynote, and it was also skipped over during first breakout session I attended.

I headed over to this first breakout session entitled, “Resolved: Online Patient Communities are an Effective Way to Deliver Care. A Symposium Debate” between Andrew Watson, MD (for), and Jeffrey Benabio, MD (against) and moderated by Alexandra Drane. I expected a rousing debate about the dangers of patient-led online communities, but in the end Dr. Benabio admitted that Dr. Watson’s position was the one he sided with most (it was actually fairly clear throughout the entire debate that Dr. Benabio wasn’t wholeheartedly against online patient communities).

One of my favorite parts of the debate was when Dr. Watson said that face-to-face clinics are not working, and that clinicians have a strong moral obligation to evolve with the understanding that online care does not equal scattered, inappropriate care. The argument boiled down to the potential for the spread of rumors, misdiagnoses, and inappropriate treatments among patients with similar conditions, and both sides agreed that there may be an opportunity for clinicians to get involved to help guide patient-led communities to correct information. To that end, I would point them to Health Tap, which was featured at MedX and consists of a purely online community of registered, vetted clinicians who can answer questions posed in the (free) fora with the added possibility of online patient-clinician meetings via Skype or another video conferencing platform for a fee.

But what I would caution against is the generalization of the patients who interact via patient-led online communities. Sure, there are plenty communities out there that involve pointing peers to new treatments and even new diagnoses, but the patients who seek those answers (in my experience) are savvy enough to understand that the final opinion is going to be their primary care doctor’s or their specialist’s. I would argue that the primary reason patients turn to online patient-led communities is for support, not new information, and that fact was discounted during this debate. Dr. Benabio used it in passing, saying something to the effect of, Sure, patients get valuable support online, but when it comes to the spread of misinformation, that support becomes harmful. (not a direct quote, just a paraphrase of a general argument he made)

There is a reason patients turn to the web to seek support and empathy and purposefully do not involve clinicians–we see enough clinicians in our day-to-day lives to make a clinician-free support community a necessity. And then there are  places like twitter, where patients and clinicians have the opportunity to interact on a more even playing field through the use of tweet chats and conference tweeting, and that kind of interaction is invaluable–it fosters respect for both sides of the equation and is something I have come to rely on for discussion and yes, information.

Dr. Benabio’s argument focused on the fact that there haven’t been any outcome-based studies on the benefits of online communities, and that in order to judge them like we judge other medical advancements then they should adhere to the tried-and-true test of an outcome-based study, but I believe that the results of any study can’t possibly address the kind of emotional and psychological benefit of interacting with people who are experiencing the same (or similar) life problems and challenges that you are. I even tweeted, “Wondering if the benefits of direct patient interaction will surface during this debate. #cHealth12” at one point, but they never did touch upon that point. Alicia Staley, a woman I admire greatly for her patient advocacy and insight into health care problems (@stales on twitter), stood up to discuss this point a bit more, and talked about how social media saved her life, but the moderator was being pushy and the debaters didn’t have a chance to respond fully. At that point, it was becoming clear that Dr. Benabio was pro-online patient communities, despite his prepared opposition, so they mostly wrapped up the debate and the two doctors agreed with each other.

Two of the events that followed stood in stark opposition to each other, and I would like to take the space of a separate post to discuss my reaction to both of them. Susannah Fox of Pew Internet Research gave her keynote address entitled, “The ‘e’ is for Engagement: the Latest Research on the e-Patient Revolution”, and then I attended a breakout session with a panel entitled, “You’re Talking to Me? Ensuring Patient Comprehension and Motivation.” While these two events did not directly follow each other on the agenda, I would like to raise them in contrast to each other in terms of their use patient-centered language and respect for patients, and discuss how the overall effect colored my view of the conference and of the rest of the presenters, and why I think we need more of one and less of the other.

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Into the Ring

Where do I begin?  The last few weeks have been a whirlwind of physical and emotional changes to have me seriously considering my future and the progression of this disease.

A week and half ago I began to experience numbness and tingling in both of my  lower arms, wrists, and hands, to the point where I was dropping nearly everything and couldn’t hold a pen.  The accompanying pain was constantly on the forefront of my mind, and I became increasingly nervous as it continued to grow worse.  I was diagnosed with carpal tunnel, which is usually caused by structural change  and nerve damage within the wrist due to overuse. In my case, however, the nerve damage is most likely result of eleven years of continuous dislocations, and even with constant bracing, it is unlikely it can be reversed. I’ve been wearing splints constantly for the last week and a half, and the immobilization has got me thinking in whole new ways about the importance of touch and contact in social life.

As is frightfully common in Ehlers-Danlos, when one thing goes wrong others follow. With my wrists immobilized, my fingers have begun to become hypermobile, so I have to stabilize them the best I can with compression gloves designed for arthritis patients. These gloves leave only the tips of my fingers showing, the rest of my hands encased in protective armor. Someone remarked to me the other day that I looked like I was about to get into a fight or had just come from one, and I laughed, saying that I hoped they made me look tough.

Additionally, as of the last week, if I have to use my left arm for any significant amount of time, I have to brace both the elbow and the shoulder, in addition to the wrist and hand. And not even three days ago, I dislocated my right SI joint, and my right leg has been bothering me ever since. I’m not positive I reduced it fully, since my right leg still aches at its original level of pain, and my left leg has been having problems sympathetically. What this means is that I’m essentially braced head to toe: both ankles, knees, both wrists, both elbows, and one shoulder.

I am armored and ready for battle.

I’m protected from this battle that my body seems to be waging against me, and the opposition seems to get stronger every day.

What I realized recently (and this is even harder to say out loud into dictation software than it would be to manually write it down) is that I’ve been living in denial for the past three years. As the changes to my body (and my lifestyle) come more rapidly, I’m watching myself grow more and more disabled as the cumulative effects of this disease cause unavoidable, permanent damage. And so now that I have acknowledged that further change is not only inevitable but by all predictions imminent, I wait, knowing that bracing is not going to be a permanent solution, but it is a solution that allows me to go into battle fighting strong. I am ready for that fight, just as my friend remarked, and I’ve stopped allowing my armor to make me feel self-conscious about my body; instead, its constant, unavoidable presence is allowing me to face my disease and my progressing disability head on.

I don’t know why various parts of my body are choosing now to let me know that they can no longer handle the stress of daily living, but as the days go by and I lose more and more upper body function, and my lower body reminds me of its problems, I’m beginning to realize that there are lessons to be learned here and ideas to be fleshed out. The hardest part has been telling my friends that these sudden changes are permanent; the look in their eyes when I describe the meetings with the Accessibility Education Office and the new adaptations I’m in the process of making reminds me that this disease is scary, and that these physical changes are scary. Having lived with mild symptoms for so long, I had begun to think of EDS as mild and livable, though I rationally understood the potential for progression.

But it’s not even three months into the semester and this is the second blog post I’ve written about all the changes that my body is undergoing more rapidly than I could have imagined, and there is nothing I can do to stop it.

So I fasten my armor, and prepare for battle.

It’s going to have to be a battle of wills, a battle of mind and of temperament. I am preparing with books, conferences, and social media engagement, the only ways I know how. I just finished reading How to Be Sick by Toni Bernhard, a Buddhist-inspired guide on living with chronic illness, and I am excited to write about everything I’ve gleaned from it. On Thursday I attended the Connected Health Symposium in Boston (though Friday I was too sick to attend completely), and I will be writing about what I learned about health care and the potential (or lack thereof) for patient-centered care in the coming days. And I continue to learn from, be inspired by, and benefit from the incredible support of the spoonie social media community.

I’m worried and scared about what will refuse to work tomorrow or the next day, but I know that my fears will blow through just like this impending hurricane, and recognizing those fears does quite a bit to allay them.

I have a quote on a virtual sticky note perpetually up on my screen that contains this quote from an online source I found years ago: “Dance with EDS, don’t fight. Fighting an incurable, progressive disorder probably means you’ll lose. But dance with it, and you’ll find some grace. Some days you’ll lead, some days EDS will lead, but you’ll be dancing, and you can still cover most of the dance floor, just in smaller steps…”

Then I guess I’m a dancing warrior, because I’m not sure I can sit back like I have for the past 10 years and let symptoms come and go. At this point, I’ve let EDS lead a bit too long, and at least for now, I’m going into battle, braces tightened and gloves on.

The Importance of Labels

I am writing this instead of writing a paper, but I need to get these words out so that my brain has some space to breathe.

This weekend I traveled with my family to upstate New York for my grandfather’s memorial service. It was a 4.5 hour drive to the church from our house, plus the hour from my dorm to our house, so all told I spent 11 hours in the car this weekend. The memorial service was pretty nice for the most part, aside from a dunce of a pastor who was very disappointed when no one wanted to get up and say something they remembered about grandpa after my Aunt Nancy delivered her lovely, heartwarming eulogy. He said, and I quote, “You know, when they print a short obituary in the newspaper for a man who was almost 92 years old, a lot is missing in that obituary and it’s our job today to widen it, to tell the story. [silence and sniffling] No one? No one? Well, fine then.”

That was so inappropriate for so many reasons, but I’m sure you can figure them out.

The next morning I woke up stiff and sore from the motel bed but didn’t have much opportunity to loosen up or stretch because the room was freezing, and it was even colder outside. I bundled up and hurried to the car for the following 5 hours, where I actually managed to doze off for once.

And that, I believe, was the source of my problems. I wound up in urgent care Monday (yesterday) night, having pinched my piriformis, sciatic nerve, and something (another nerve/muscle combo) in my neck all on my left side. I was in tears as the nurse examined me, and by the time the only doctor on staff came in my room all she could say was, “What do you want me to do for you?”

The car has never been a good place for me, but sitting in variations on the same position for 11 hours over the course of three days exacerbated the effects of stress and cold weather on my already loose joints, and put my joints in the perfect position to pinch important things.

Luckily I woke up this morning feeling worlds better with the help of some pain medication, lots of heat, and some more crying. Unfortunately, that state of feeling better had to come after I awoke at 3am having subluxated my right SI joint, dislocated my left first toe, and subluxated my right ankle (the one I dislocated & subsequently sprained in late April).

So I was ready to do some damage control at physical therapy today for sure.

I was doing so well – my PT had me on super low resistance exercises for my shoulders (we’re talking the yellow theraband, here) and a warmup of 10 minutes on the bike. Things were moving along well! This set me back a month, and the PT assistant who saw me today could tell I was disappointed.

I was disappointed on one level, but (dare I say it) relieved on another level. Like I said in my last post, sometimes I don’t feel like I’m chronically ill and that makes me feel guilty for not being as sick or in as much pain as the other people who are doing incredible things despite their illnesses. So I guess I asked for it: let me tell you, I was in pain. My PT completely understood, and gave me some advice on how to stay on top of the cycle of pain so that even if I am feeling well, I have to take the medication so that hell doesn’t break loose like it did last night. I am so lucky that she can fully understand the difference between chronic and acute pain, and that we’re on the same page when it comes to treatment: she knows that she’s treating for the acute pain, so that dislocations and subluxations don’t happen nearly as frequently, so that we can get down to the chronic level and work from there.

And this praise of my wonderful PT brings me to the source of my frustration this evening: my PCP. I was going to rant on twitter with a multitude of 140-character mini-complaints, but I decided those would be better fleshed out here in full, if only for my own satisfaction and stress release.

My PCP, for the sake of this blog hereby titled Dr. M, has been reluctant to listen to me from the start. My freshman year I came to her complaining of increased joint pain, and she told me that it was because I had stopped dancing. I probed a little further on my next visit, and she admitted that I was a “little” hypermobile, but that it was the result of 18 years of ballet and that to alleviate the pain I should do some rigorous exercise.

When I came in next, it was for a subluxation of my SI joint that occurred while I was exercising. I brought in my research on Ehlers-Danlos Syndrome, and she didn’t even look at it. I went down the list of symptoms and diagnosis factors with her and she did some blood work to test for rheumatoid arthritis and referred me to the rheumatologist, who was absolutely no help whatsoever. She was brusque, disbelieving, and hadn’t even bothered to look in to connective tissue disorders. When she asked me to demonstrate one of the Beighton criteria by bending my thumb toward my forearm, she asked me to bend it backwards, with my palm facing the sky.

Well of course it wouldn’t touch my forearm that way! I couldn’t think fast enough to contradict or correct her because she was so cold and thoughtless.

When I followed up with Dr. M shortly thereafter, I needed her to believe me. I needed her to put a name on the pain that wouldn’t go away, the pain that kept me out of class some days, the pain that made me hard to live or be friends with. I was desperate for a diagnosis because the psychological pain of not having answers was getting to be unbearable. I think many chronically ill patients would agree with me when I say that the psychological pain of remaining undiagnosed was sometimes worse than the physical pain of the disease itself.

I spent nearly every night on the EDS message boards on the Inspire site, adding to my growing pile of evidence that EDS fit my symptoms perfectly. Even the “colors” of the disorder were perfect: zebra stripes, because doctors are taught to look for horses when they hear hoofbeats, not zebras, and thus leave many unusual or rare diseases undiagnosed while ruling out the more common ones.

I told Dr. M all this when I came to her nearly in tears, begging for a diagnosis, but she didn’t give in. She still hasn’t, in fact. Her excuses vary each and every time I see her: don’t I want a clear health record for health insurance? surely I want a low insurance rate? I must be worried about being discriminated against by potential employers, right?

Yes, yes, and yes. Yes to all the concerns about having a chronic, incurable illness. Yes, I’m worried about being discriminated against (I already have been, but that’s another story for another day) and I’m worried that if Obama doesn’t win I’ll have to scrounge together health insurance where I can find it once I turn 26 if I am diagnosed with a preexisting condition.

But those concerns are nothing compared to the weight of being undiagnosed. Unofficially, I have been diagnosed with Ehlers-Danlos Syndrome, Hypermobility type by a geneticist friend, my physical therapist, my pediatrician, and both urgent care doctors I have seen, but the diagnosis on my chart is “Joint Hypermobility Syndrome” (yes, yes, I know that’s a generalized way of saying EDS, but try telling that to Dr. M!). This means that I start shaking in the waiting room every time I see Dr. M because I’m worried she won’t listen to me yet again. I get stressed and grumpy and generally anxious in the days leading up to an appointment with her because I’m bracing myself for another confrontation where I will have to lose, again, as the “uneducated” patient without a medical degree.

So this is what I am facing as I anxiously await my Friday appointment with Dr. M to “reevaluate” my usage of tramadol. Let’s be completely clear: tramadol turned me back into a human after months of pain at the level where I couldn’t even wrap myself in a blanket for the pressure it placed on my aching joints. Tramadol is an opiate agonist, which means that there are concerns with taking it as a long-term pain medication, and I’m completely aware of those concerns. Since it changes the way your brain experiences pain, every time the dosage wears off you can go into a mild withdrawal state where the pain actually feels worse than it would otherwise. This is the issue of dependence, which all EDS literature states is not dangerous. Dependence is different from addiction, which is very dangerous. These are nuances that Dr. M doesn’t understand.

The first appointment when I brought up EDS, her response was, “Why do you need a diagnosis for a disease that has no treatment? You’re taking ibuprofen for the pain, and our only options for managing the symptoms are that or narcotics, so I don’t see the point.”

Ibuprofen or narcotics for pain management. Oh, what’s that you say? But I’m on a medication other than ibuprofen that is also not a narcotic? You’re right, that was a fluke of the urgent care doctor last month. She prescribed it, understanding the different methods of treating chronic pain.

Why is it so hard for Dr. M to understand? What can I do differently to help her understand?

This life-saving fluke may very well be revoked from me on Friday if I can’t shake my fears long enough to A) explain myself or B) request a new PCP (I’m requesting a new one after Friday regardless, no worries there).

This afternoon, my PT said a little word that altered the course of my day, changing it from bad to better. She said, “I know this flare was hard, but you stay on top of that medication and we’ll do our best on our part to bring you back to baseline.” She called what happened to me yesterday a flare. A flare! That word is used to describe increased RA symptoms, but I had only ever applied it to mine in my head, afraid that someone would call me out for being a fraud (there’s another f-word I’m seeing in my mental space more often lately…have to take care of that.).

She put a name to that “incident” that legitimized my pain and frustration, and I’m sure she didn’t even do it on purpose! The magic in this one little word is probably hard to comprehend for someone who neither has a chronic illness nor is a caregiver for a spoonie patient, which I suspect is Dr. M’s problem. But imagine how much it would mean to have the words “Ehlers-Danlos Syndrome” come out of her mouth in relation to me, to a final diagnosis! Sure, I’ve been living with an effective diagnosis, and she has intimated that if it weren’t for her own concerns she would write it on paper, but it would be like that commercial for Claritin where the picture is shown in grey until the subject takes the Claritin and sees the world in color: my world could be in color. I would be “official” and I would never have to deal with feelings of inadequacy or fraudulence again. I could advocate for others in a similar situation without hiding behind a façade of wellness, and I could let this new advocacy voice perform at full capacity.

I should note, as an addendum, that every specialist I have seen has interpreted the official diagnosis of Joint Hypermobility Syndrome as EDS, which is why I can go about my life as if my PCP had made the diagnosis, since it would seem that every medical professional except her is up to date on their terminology. So I call it by its more well-known name, and hope that one day Dr. M will, too.

Why not me? The Guilt of Relative Health (or, Thriver’s Guilt)

This weekend I put off doing homework for a few days and decided on the spur of the moment to watch the Stanford Medicine X conference livestream. I had never heard about it before the hashtag #MedX kept popping up on my twitter feed, and when I looked into it a little further I discovered that the topic of the conference was something that is close to home: social media, patient advocacy, and patient-centered health care.

These are broad strokes, of course, to summarize the key themes I took away from this well-designed three-day conference, because those are the points I have been thinking about this week. And those are the themes that unlocked the latent voice of the patient advocate in me.

For years I wanted to go to medical school. I thought that was the most esteemed route, the path that would lead me to the only place where I could learn something new every day, teach others, and change people’s lives. I graduated valedictorian of my high school class, so no one was surprised when I proclaimed that I wanted to be a neurosurgeon.

And then one day I fainted at the sight of blood. And I fainted again a few days after that when I cut my finger with a pair of scissors. How ridiculous! A body that couldn’t bear the sight of blood, no matter how adamant its brain protested. Honestly, have you ever heard of something so absurd? But that was my new reality, and I turned my dream elsewhere as I stumbled through freshman fall, lost and unsure of how I could plan my life so I could make a difference – outside of the operating room.

Luckily I didn’t take very long to embrace the key tenets of a liberal arts education, and I found myself swept up in learning for the sake of learning, for expanding my world view without a concrete end point in mind. Soon I did manage to formulate a plan, however, that involved copious travel, working for the State Department, and championing women’s rights in Afghanistan. Or something along those lines. I was living a new dream, one where I studied as many languages as possible, buried my head in Foreign Policy back issues, and never missed a meeting of the Community Action Committee at the Institute of Politics.

My health problems began to catch up with me, and with each subsequent blood test, doctor’s visit, or hour of frustrating online research, I took solace in the literature classics that had been my refuge between high school chemistry exams. I rediscovered my love of analyzing literature and understanding their historical context, which landed me in my current position as a History and Literature major. And as someone without a solid life plan.

I don’t mean to soliloquize about my “college years” (after all, I’m only 21) – this is all just to say that I have spent a lot of time trying to get to know myself and understand where I’m headed. With every shift in interest, I’ve always constructed a new plan, a new shape for my identity, and last weekend’s conference had me thinking about where my identity is headed next.

Who am I?

I am first and foremost a daughter, then an older sister, then a best friend. A student and a dancer, then a student and a singer. A roommate and classmate. And then: a patient. A chronic patient in search of answers, treatments, solutions, best practices.

It is becoming harder and harder to separate all of these facets of my identity, as is usually the case once one reaches adulthood, I imagine. I can’t hide my pain from my roommates anymore, nor from the women in my choir. Every time I ask someone to help me open the door or lift my backpack from the floor, I feel a piece of the 19-year old student slipping away. I’m not the same person my roommate met two years ago, and I don’t know what I look like in her eyes. Does she understand that I’m not making any of this up? That my increasing doctor’s visits aren’t due to my increasing hypochondria, but instead to an increase in symptoms? Who does she see? It used to be relatively simple to guess: I was a book-loving introvert who loved to sing in the shower and talked way too long about the beautiful sunset I saw on my stroll along the Charles. But now? Who am I?

On our annual retreat this year, I told the 45 young women in my choir that I am officially disabled. We have a section of the two-day retreat where people have the opportunity to speak about how much the choir means to them (we’re a tight-knit group), and something inside me was moved to get up and tell them my story. When I finished, there was not a dry eye in the room, and I sat down stunned. How had I just moved people like that? I have formal training as an actress in musical theatre, but that was no performance. They had reacted to my genuine story, my heartfelt emotion and gratitude for their never-ending support. I told them about my illness because I wanted to tell them how much they all mean to me, that their smiles and hugs and displays of sisterly affection are sometimes the only things that propel me out of bed in the morning, even if they never knew.

I got lucky: after I told them my story, no one treated me differently. A few girls came up to me and told me that they never knew what I had been going through, and I received a few text messages from girls saying that they wanted to be like me when they “grew up”, but when we were back at rehearsal, there was no pity or fear in anyone’s eyes.

Apparently, I’m a role model.

But in the wake of hearing so many incredible stories about chronically ill patients at Med X, I can’t help but think that I’m not sick enough to be a role model. There are so many other people who are living their lives despite really difficult illness, and compared to them I look healthy. Sure, I have a chronic illness, but I can walk, most days I make it to class, I get to see my friends almost every day, and I sing in and am on the executive committee of a student-run collegiate choir.

Why do I get to do these things when other people struggle to make it to the bathroom? Who am I to have these opportunities in between dealing with my illness? 

Recognizing my abilities in my disabled body has had the double-edged effect of making me so grateful for the blessings I have been given and also making me feel so guilty for them. My mind wants to tell me that I’m a fraud when I have a day at a 3 on the pain scale, and so I’m momentarily relieved when I dislocate my shoulder rolling out of bed, or I pinch my piriformis walking down the street, because then I know that I’m not making this up. And yet these things are only a fraction of what other spoonies go through. 

Who am I? How can I tell people I’m sick when I have a good day? How can I believe my own symptoms when they disappear for a day, or an hour? What is my new reality this time?

I sometimes feel like I’m waiting for the other shoe to drop, and in effect, I really am. My doctors unfortunately do not take the time to research my case (except for my wonderful physical therapist), so every time I see them and request a new test or exam, they find new conclusive evidence to support my diagnosis, and this leads me to believe that we will continue to find more problems. This is not to say that I want those problems! I don’t, believe me. I really still harbor that dream of traveling the world and saving lives and at this point it’s looking like that could only happen inch by inch.

But this brings me back to last weekend, and to when I reconciled my guilt and my abilities. I realized that there is a reason that I am going to graduate from college and work in academia instead of living my life from my bed: I get to fight for those who can’t. I don’t know how I will do this, but I know that there is a reason that this struggle has been placed on my heart and in the front of my mind, and that I will find a way.

This seems like big thinking in a short period of time, I know. But I’m a dreamer. I tend to think big, and I’m not willing to scale this one down. I think I will figure out how to get there, how to become a patient advocate for myself and others. I think I can.

And I’m not quite used to feeling guilty for not being in pain sometimes, or not having to reduce my shoulders 20+ times a day, but I think that will come too. I think I’ll figure out how to deal with the pain that I do have without looking for more, and perhaps that will come when my doctors finally take the diagnosis they have written on my chart and believe it themselves so I can start believing it as well.