[chroniccurve]

In Debt and Indebted to: PA School Class of 2022

One of my earliest memories involves a take apart anatomical model. I was five and can remember the smell of shitty plastic that made up the clear woman whose organs you could remove. I’d take them out, scatter them across the coffee table, examine the cross sections, and try to put the pieces back into position. 

The last two years, I’ve spent most of my time recreating that in my life: taking apart the pieces of my life, trying to put them into place. It involved a lot of risk: accruing debt to take on an unpaid position to gain challenging clinical hours; finding a rare disease specialist via Twitter DM of all ways; moving to Tennessee; starting an experimental dose of medication and accruing medical debt for better quality of life. It also involved enormous reflection on why I had been rejected from all 12 schools for a second time, and why I had attached my self worth to an academic achievement rather than my inherent existence. Every second of that dissection was worth it:

I got into PA school. I got into freaking physician assistant school. 2022, I will be EB, PA-C. 

I have spent the last two weeks reflecting on everything that brought me to this point and how insurmountable it all seemed at times. Two thoracotomies, multiple full spinal fusions and revisions, chest tubes, countless days in infusion centers, the metaphorical detangling of DNA to discover a one-in-a-million PSTPIPI mutation, finding a specialist familiar with the mutation at Vanderbilt, applying repeatedly for expanded use for a medication that is single handedly shrinking my previously enlarged liver/spleen and drastically increasing my quality of life. I have been through hell and I have fought like hell for this.

Maybe it’s lame, but to get here truly feels like a testament of survival. The ultimate external validation that I have made decisions, put in work that is blissfully incongruent with that of my parents’ unhealthy legacy. That I did something more with my experiences of illness beyond resent it. But I couldn’t have done it without encouragement here, to not give up, encouraged to believe that healthcare professionals can embrace what it means to be human--and yes that includes disability.

I know I will be a better clinician for having one foot inside this weird patient world at all times. 

And so I am asking for your help as humbly as possible: I cannot afford my seat deposit. It is $750 and cannot be paid with a credit card, nor paid in installments. It has to be paid via check or money order in one lump sum. Unfortunately, my school is only able to extend the deadline to September 9th, which I have accepted. My seat in this program is considered unsecured until the deposit is paid. I do not have immediate family that is able or willing to help as many applicants do. No qualified and accepted student should be denied a chance solely because of a lack of privilege or financial indigence. 

I am $5k in debt from the application process alone, and it was worth the risk: I made it. So it seems absurd that something as simple as a seat deposit could cost me a life goal. The reality of the situation is that between working in wound care for $8.50/hr and an unpaid/per diem clinical internship at ~Southern Reproductive Clinic~, not to mention my current personal medical costs, I need help. 

If you have been positively impacted by this blog or the work I’ve done here and feel so inclined, there is a gofundme 

started by a friend on my behalf. I will post emails to verify everything I’ve just written is true and anything beyond the amount of the seat deposit will go towards medical bills and school-related expenses (Currently, I do not have a computer (using my partner’s) nor funds to prep for school physically), as well as fees GFM takes out. 

I am forever indebted to you, every single person who has read this blog between 2012 and now (halp I am old). I would never have gotten here without help, without a support network, without friends who have become my family. I am indebted to all of you and promise I will pay it forward. Even if there’s only ~3 of you still here all these years later ;) 

Love,

Emily

[chroniccurve]

10 Things I’m (still) Learning From My Second Round of PA School Applications

Currently in the midst of waiting on my second round of PA applications, and today I’m reflecting on what the whole process is teaching me. So let’s keep it real for a second here...

The success of others is not your failure. Maybe this is a uniquely American thing, the whole “I got mine, you get yours” thing, but we can help others achieve their goals and it not prevent us from achieving ours. Be good to your friends, congratulate them. Find ways to take the bitterness you might feel and turn it into something useful other than a festering wound of insecurity. It’s ok to feel that way, but don’t stew in it. 

You might have friends who get accepted to and graduate from PA or med school before you’re even accepted. Real talk: that’s hard to stomach, especially when some of those people have more resources (financial or otherwise) that allowed an easier path to get there. But their path doesn’t matter. What you do with yours, does. 

Don’t make medicine, academia, or science your entire identity. Have a hobby, an interest. Get into ~craft~ coffee, take up baking, try your hand at oil painting. It’ll help both personally and professionally.

Working in medicine really isn’t glamorous, so can we stop romanticizing it? It looks nothing like the med students with neatly pressed scrubs and perfectly coiffed hair that you see on instagram, it really doesn’t. Sometimes it looks more like coming home from work smelling like pus in poorly fitted scrubs from Walmart because you can’t afford nicer ones. You know this, I know this, so let’s keep it real. 

Comparing your stats is just an exercise in creating anxiety. Sure, it’s good to know where you stand relative to the schools you’re interested in, but beyond that? Don’t post to reddit asking if you’ll get in for the 10th time. No one cares what your GPA is aside from the adcom reviewing your application. No one cares that you crushed your MCAT or GRE, and too much of this just looks like one pissing contest that no one really wins. There will always be someone smarter than you, that’s ok. Comparison is the thief of joy the ability not to lose your mind.

Curb your (public) complaining. Yes, this process is frustrating, long, full of uncertainty. But if you have the resources (financial or otherwise) to apply, be proud of yourself and grateful that you’re at this very point. A lot of people aren’t able to get here, a lot of applicants are at a systematic disadvantage. Let’s check our privilege and consider that years spent in ~application limbo~ are a gift in terms of the ability to pursue one’s personal and professional growth and goals before committing to a program.

Be honest with yourself about rejection and open to critical feedback. Didn’t get an interview? Take some time to be down about it, but allow yourself the space to explore how you can grow and be honest about it. Consider allowing someone you trust to give you unfiltered feedback on your application. It might suck to open yourself up in that regard, but also might make you better as an applicant. 

Make sure you have a plan B, but make sure it’s one you’re actually okay with pursuing if plan PA-C doesn’t work out. Mine is a masters program in neuroscience bc nothing made me happier in undergrad than teaching neuroanatomy lab and weirding out my students. What’s yours?

There’s zero shame in applying at any age or point in your life. Doesn’t matter if you’re 25, 35, 45, even 55. You. Do. You. What I love about the PA profession is that so many people entering the field have different backgrounds and aren’t necessarily coming straight out of undergrad. Ignore any noise about being on a certain schedule or accomplishing certain things before 30. Believe in yourself, believe in your path, no matter how nontraditional. 

Embrace your story. Embrace your background. Embrace your differences. If they got you to this point, if they are your motivation for pursuing this profession, use them as a tool to show the admissions board who you are, why you deserve a spot, and how your diverse or nontraditional background is advantageous to working with people. Obviously don’t overshare, but you don’t have to be a cookie cutter applicant. Be unapologetically, authentically you.

[chroniccurve]

Not Otherwise Specified: We Need to Talk About HR620

I had 8 links planned for today’s NOS, but right now, there’s only one that’s important (I suppose you could say this week’s post is rather...specified). We need to talk about #HR620. You need to know about HR620. Yes, you. Every single person who reads this is only one moment away from being disabled, assuming you aren’t already. 

Our society acts as though disability rights are an issue limited to the disability community. This way of thinking is deeply misguided. Disability rights are everyone’s issue, even if they are not a concern for you personally at this time in your life. Equally important: you do not need to be someone who uses a mobility aid to be disabled (arthritis community, I’m looking at many of you).

Yesterday, the House passed legislation that amends the ADA and removes incentives for businesses/public institutions to comply with law. What this means is that if complaint(s) are filed against a business for an ADA violation, they become meaningless.

“We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate,” said a September letter from the Consortium for Citizens with Disabilities signed by more than 200 disability rights groups. “Such a regime is absurd, and would make people with disabilities second-class citizens.”

Where can I learn more? Can you explain how this would impact people specifically? Why should I care? Sure, read these threads:

National Council of Disability’s Letter to House Leadership Regarding "ADA Education and Reform Act of 2017″

Hold Your Members of Congress Accountable for Voting to Roll Back Disability Rights By Decades This resources also gives you a script if you would like to call your senator

Washington Post coverage

This Twitter thread aimed at people without disability re: why the ADA matters, by a writer whose husband is a wheelchair user. She explores the every day facets of their lives impacted by ADA and accessibility. 

This Twitter thread in which Sen. Tammy Duckworth, who shares about her own experiences as an amputee to highlight why this legislation is abhorrent.

Read the hashtag #HR620 and #HandsOffMyADA on Twitter

What can you do?

Read this post: 6 Things You Can Do to Protect Disability Rights Today

Call your senators. You can find contact information for your state here. 

Tweet your senators. 

Write/email them. 

Do something beyond RT’ing or liking a blog post. Use your voice. 

[chroniccurve]

Not Otherwise Specified: Part 2

As anticipated, I slacked on the weekly posting, sorry! Keep an eye out for a rare disease-specific NOS this month in anticipation of Rare Disease Day.  Here’s what I’m reading this week:

How Doctors Respond to Chronic Pain -Although this was published in 2013, it’s never been more relevant. Perhaps the best post from the MD perspective on treating chronic pain that I have ever read. I admit, I was defensive when I started reading this post. It quickly stripped my walls down. If you can find it within you to have an open mind, all chronic pain/illness patients should read this--even if you disagree with this physician’s perspective. There is so much to be learned here about having empathy for each other.

Why I Tell Men About My Chronic Disease on the First Date An interesting piece on vulnerability, dating, and chronic illness via Ana Saldamando. Frequently in the patient community you’ll see people discuss keeping their complex health conditions quiet during dating for fear of scaring someone off. But what happens when we do the opposite, offer up a vulnerable piece of ourselves in an effort to connect more intimately? What are your thoughts on this?

Calling all MD/PA Students: The David R. Cox Scholarship for Rare Compassion Now Accepting Applications This scholarship through Global Genes pairs an emerging healthcare students with rare disease patients and their family with the goal of “developing and understanding compassion for the challenges and lifestyles that patients diagnosed with a rare disease are faced with everyday.” A fantastic opportunity for anyone in meded right now. They are also looking for rare disease patients to participate. 

This twitter thread about a nurse caring for a black patient of hers who received inadequate pain management. Turns out, the patient was also a nurse. This is a must read re: racism, pain management, advocacy, and compassionate care

This twitter thread by a palliative med physician that explores whether or not clinicians must suffer in order to truly see the suffering of their patients, and if so, if this a failure of medical education. Amazing thread. “Our training in all healthcare professions should help us understand the patient's experience because we can't afford for every doctor, nurse, pharmacist, PT, OT, RT, SW, etc to nearly die and get better before they become compassionate.”

Howling at the moon: Six interviews with artists who redefine illness and disability “There is not one definition of illness, nor is there one way to experience disability — yet mainstream media’s depictions remain limited. Nearly forty percent of Americans live with illness or disability, and our stories need to be told, but many of us are still isolated and invisible. We sat down with six creatives who are working to change that.” If there’s one piece you read today, make it this one.

Oregon State University study finds that people with rare disease are at risk for poor quality of life Longitudinal study found that systemic and rheumatic rare disease patients had the poorest quality of life amongst all rare disease communities. The findings also suggest that more funding should go toward creating support networks and conferences for rare disease patients. OSU researchers hope to take these findings and work with the patients involved in the study to create a ‘blueprint’ for supporting the psychosocial needs of the rare disease patient population.

More good stuff:

Mosaicism and TNFR-Associated Periodic Syndrome (TRAPS): A Case Study 

Making The Case That Discrimination Is Bad For Your Health

Failure of Communication: A Patient’s Story about their lack of anesthesia during a cesarian section, and what obstetric anesthesiologists learned from her story and suggestions for improvement.

Applications for travel awards for the Arthritis Foundation’s JA Conference close on 2/26

HealtheVoices Conference applications are open until 2/19

Women in Medicine twitter chat--a place to find mentorship and share experiences as women in medical education, Sundays @ 9pm ET. 

Books I’m reading this week: A Man Called Ove and Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine

Podcast I’m loving this week: In Sickness + In Health:  a podcast about chronic illness, disability, healthcare, and mortality, hosted by multimedia artist and patient advocate Cara Gael

That’s it for this week. What are you reading, watching, listening to, or learning from? Any thoughts on pieces published here, or suggestions you might have? Let me know on twitter @ chroniccurve​ ​ or in the comments below

[chroniccurve]

Not Otherwise Specified: Part 1

The first of a hopefully weekly list, where I’ll be posting stories, articles, podcasts, and various other pieces related to medicine, education, patient blogs, provider perspectives, and STEM topics that stood out each week:

A Medical Breakthrough That Can Do Everything--Except Make Me Better “For the non-disabled, hearing about the physical impact of my disease often stimulates a strange Pavlovian reaction, drawing on feelings of pity, tragedy, heroism and inspiration. But the fact that my muscles are not particularly useful is not pitiful nor tragic nor heroic nor inspirational. It is just life.” --David Bekhour, @ optimisticgrin​ 

Her STEM Story: a podcast showcasing the extraordinary stories of real women in STEM - So excited to see where this goes and what kind of mentorship this might foster. They have four episodes up thus far, sharing stories re: medicine, bioengineering, coding, even paleontology. - If you have a STEM story you want to share, you can email them: [email protected] or tweet them @ herstemstory 

This Twitter thread and the #transhealthfail hashtag, full of replies and anecdotes from trans patients sharing experiences that highlight major barriers to appropriate medical care. There’s a lot to unpack here and a lot we can learn from in order to do better. Critical reading for anyone interested in any role in medicine. 

This Great Patient I Had-- a reflective reddit post by a neurology fellow about a patient of his with ALS. My synopsis will never do this post justice:  “This wasn't a medical mystery, or a cautionary tale. I didn't lose him. And it's not necessarily tragic - it's just the story of this funny, great guy who managed to stay funny and stay great, even after he was handed a death sentence. He loved his wife and he missed the road. From the beginning of my PGY2 year, he saw me grow up, in a way. He became part of my personal history and we shared some laughs.He was the patient that did at least as much for me as I did for him. Sometimes, people are amazing.”

Two dying memoirists wrote bestsellers about their final days. Then their spouses fell in love. - A piece that explores a new relationship built in the midst of grief, literature, love, and loss. If you have yet to read When Breath Becomes Air, I have to encourage you to get your shit together and read it ASAP. It is a transformative, illuminating, challenging read for anyone and everyone--not just patients and providers. Looking forward to reading The Bright Hour as well. Has anyone read this? Thoughts?

Suggestions for My Memorial Designer, researcher, and patient Katie McCurdy says she’s approaching death at the same rate as most 39 year old’s. The difference? She’s planning for it. A thoughtful exploration of what her own memorial might look like, Katie manages to discuss end of life and her wishes with the perfect balance of heavy and light. You can follow her on Twitter @ katiemccurdy  

More good stuff:

Arthritis Foundation’s JA Conference opens applications for travel awards. If this is a conference you or someone you love might be interested in, apply soon for funding before the 2/26/18 deadline.

The Hospital Gown Gets a Modest Makeover 

Afraid of Falling? For Older Adults, the Dutch Have a Cure 

Structural Competency and Psychiatry-- recognizing the ways socioeconomic and political conditions create inequalities

HealthTech Reads. Essentially a health + tech related virtual book club via Twitter. Loving the suggestions + chats thus far. 

@achronicvoice, a chronic illness-related twitter/webspace you should be watching right now

Book I’m reading this week: From Here to Eternity, Traveling the World to Find the Good Death

Youtube I’m watching this week: Tiffani Ntanos- vlogs about life with a spinal cord injury, gastroparesis, and cancer. 

Self study resource for this week: Netter’s Anatomy Coloring Book 

That’s it for this week. What are you reading, watching, and learning from? Any thoughts on pieces published here, or suggestions you might have? Let me know on twitter @ chroniccurve​ ​ or in the comments below

[chroniccurve]

10 Lessons on medicine, chronic illness, and disability I’m taking with me into 2018

New year, new me? Not quite, but I did learn a lot about what it means to work clinically/embark on an actual career in medicine with a disability + disease this year:

Don’t let your time in one clinic/specialty discourage or disillusion you from pursuing similar opportunities elsewhere. Remember that healthcare providers are people with the same weaknesses and shortcomings as you. You’re going to see and hear shit that will repulse and infuriate you. Remember those moments. Don’t repeat the mistakes you witnessed. Remember there are eyes and ears everywhere. Recognize when it’s time to walk away from a toxic work environment. Don’t let extraneous crap get in the way of patient care. 

Being a disabled healthcare provider of any sort is hard. There will be days where you won’t be able to hide your flare ups. Embrace it, do so with humor. Do not give others the freedom to question your competency because of your visible symptoms. Do not let it be a topic of conversation in the clinic unless it’s one you bring up. It’s no one’s business but yours. Stand up for yourself and refuse to see it as a weakness.

Remember what it feels like to be at what some people consider the bottom of the food chain. The nurses, MA’s, PCA’s, techs you work with are the backbone--learn from them. Treat them as your teammates, with kindness, respect. Try to learn the names of everyone you work wth: the janitorial staff, receptionists, phone operators, the dude who fills your LN2 tanks, lab staff--everyone. Say “thank you” and “I appreciate you” frequently.

Learn how to have a conversation about sex, sexuality, and chronic pain. This will come up. Be prepared to create a safe space to have conversations about side effects, stigma, and quality of life in the context of sexuality. Approach these conversations with your own rheumatologist/pain specialist.

No task is beneath you if it helps someone. It doesn’t matter what your job title or position in the medical hierarchy is. Be willing to help.

Putting off your medical appointments is the least helpful thing you can do for yourself. Yeah, working on this one. If anyone has any suggestions for scheduling appointments/procedures in the context of a med job/education, let me know.

There will be times when it feels like getting into a medical program is insurmountable, coming from a low SES background with a disability. It will feel like the odds are absolutely stacked against you. You’re not wrong: the odds are, statistically, stacked against you. It doesn’t mean you can’t get there, but it does mean you have to try harder/differently than your peers and invest in yourself. There’s a path for you and it’s not going to look like the path your friends are taking. It never has. Try to remember that. Be happy for others, encourage them, get over your own ego, and remember that the success of others does not equate to your failure.

Avoid the social media highlight reel. Especially in the chronic illness instagram world. Seriously. What’s that saying about comparison being the thief of joy? Minimize consumption, be mindful that the content you contribute is neither inspiration porn nor part of the suffering olympics. 

Don’t allow the burnout of others to dilute your passion or empathy for people. Lots of people are going to tell you that a year from now, you’ll be less patient, more judgmental, and your “blind idealism” will “die.” Spoiler: it’s not true. You’re not naive or idealistic, but you’ve been on the other side of the coin in a way the people who tell you these things haven’t been. Hang onto that. It’ll fuel you through the worst shifts. 

Dignity should always transcend disease. Always. For you and for the patients you see each day. Strive to preserve the dignity of others at work. Fight for your own during hospitalizations, procedures, and appointments with the same fervor.

Honorable mentions:

Schedule rest. Make it a mandatory event. Your immune system will thank you.

Ask people to spell their last name when you bring them back to a room. If you don’t, you will pull another doctor’s patient and it WILL be awkward AF.

Perfect your poker face. You’ll need it when your toe dislocates while assisting in surgery and you have to pop it back into socket without anyone noticing. What do you mean this doesn’t happen to everyone?

Not everyone will find your puns...humerus. Think about if your joke is appropriate before you make any rash decisions.

Don’t. Drop. The. Tumor. On. The. Ground.

Wishing everyone a restful new year with some low-pain days ahead,

Emily

[chroniccurve]

Hidden in Plain Sight: musings on invisible illness, disability, and medical education

When I was five, I asked for a take-apart anatomical model. I grew up playing with plastic petri-dishes and microscopes (and mud. Lots and lots of mud). Before all of this, before chronic pain, I started my weird love affair with science. So when I put my head down and started really pursuing a career in medicine and research, I kind of cut off the epatient work completely--I didn’t want to put that lifelong love affair at risk. Every one from every direction either implied or explicitly suggested I do so. Like a cancer, I was terrified that knowledge of my disease would spread into my professional reputation as a TA, in the labs, or while in front of an admissions board. Whether we want to admit it or not, the culture of medicine historically has not encouraged or fostered self care or humanism (outside of it becoming a buzzword) in its providers. It’s changing and not all institutions are so rigid. Certainly as a whole, we are far more aware of the statistics re: burnout, mental health, and suicide. And let me be clear: this is just my perspective, my experience. That is not to say everyone has felt their program approaches its medical employees or students this way. But the amount of HCP’s that privately reach out to me online and at conferences, sharing their story in whispers because they fear their psoriatic arthritis may be what holds them back from a residency spot....it’s been an endless message that the kind of subjects my blog touched on have no place in my practice as a PA. It’s not surprising that physicians have one of the highest rates of mental illness and suicide, considering what little time and resources for self care we offer to those that care for others.

All last year, I was so concerned with respecting the appropriate boundaries while talking with patients about diseases I was so intimately familiar with, in part because I was petrified of fellow staff and the physicians I worked for finding out. I passed up numerous opportunities to connect with people in a way that may have helped their healthcare experience. Somewhere along the line, the fear became intertwined with shame, and this deep incessant need to defend and justify that yes I have X, but ~it doesn’t define me~. 

A lot of people have suggested I hide this part of my story, that I don’t make my experiences as an ePatient a talking point in a personal statement (spoiler alert: I did this anyway), that I downplay it to the extreme. But as far as I’m concerned, it’s already all hanging out there (Google is a thing), and is an integral part of who I am and why I believe so deeply in the PA profession. Maybe if more of us just ran with it, tried not to hide our stories or backgrounds and instead forced programs and this rigid culture to embrace them, we’d be better for it. It’s scary to take those steps when so much is at stake, and there’s research to back up that fear, especially as a prospective student: 

A 2016 study in the journal Academic Medicine found that just 33% of schools had technical standards that specifically supported accommodating disabilities. Of their sample, 49% (!!!) did not clearly state policies at all, 4% were unsupportive, and 14% provided no information.

Beyond the actual admissions standards, it was only within the last two years that accommodated exams (MCAT, NBME) were no longer flagged to indicate that the exam was given under non-standard test taking conditions. Meaning that prior to this, students were understandably refusing to disclose disabilities or request those test-taking accommodations at all, in fear of it compromising their career initiative, impacting their chances to match a residency, and/or gaining a seat in medical school at all. (And this is just re: medical school. I cannot speak to nursing or mid level exams like the PANCE.)

How do we get over this?

How do we get to a point where we embrace people who are willing to stand up and say yeah, I have X disease or Y life experience, and you know what? It does define me, it makes me a better provider. How do we get over this idea that disability is a dirty word?

When a college student with disabilities hopes to become a doctor, the mandate to provide accommodation comes into conflict with society’s stereotypically high expectations of physicians and its equally low expectations of persons with disabilities. The result is an almost irreconcilable paradox: a doctor with a disability simultaneously belongs to a superior and an inferior social group

Your CNA’s, nurses, PA’s, NP’s, doctors, and scientists are human. It’s time we allow them the room to exist as more than just carers, and perhaps that means not romanticizing medicine and what it means to be a provider. When do we start implementing empathy for our peers beyond a powerpoint slide or a debriefing after a hard case, and into the framework that is medical education and practice? Maybe I’m misguided, idealistic, naive. But this insidious push away from what makes us and connects us as human starts early--long before medical school begins.

To the physicians who approached me at MedX ED with incredibly moving stories, I hope you got those residency spots. To the surgeon that showed me her feeding tube and how she hid it while in surgery, I’m with you. To the friend working with neuromuscular research patients while hiding her own neuromuscular disease, I support you. 

Maybe someday soon, there will be less pressure for providers that are hiding as patients in plain sight.

[This is the first of a few posts on disclosure, disability, and medical education. if you want to share your thoughts or experiences as a part of this, I’d love to have them published here, and can be done so anonymously]

[chroniccurve]

Grand Rounds

If there’s one phrase I have learned not to use in the clinic, it’s “I understand.” Because even though in many cases I very much do understand someone’s chronic pain or patient experience, I still have no place saying this because 1. boundaries are important and 2., most times, it’s not actually helpful to hear your nurse or MA say they understand when, as far as you’re concerned, they can’t possibly. It’s not comforting, it’s patronizing.  

And Ms. T made sure to let me know of this. In the spring, we were part of grand rounds. Each nurse/MA was paired with a patient. I was paired with Ms. Loo, who had been dealing with a severe case of pyoderma gangrenosum for over a year. Having just started Humira, her wounds showed early improvement, but she still had extensive ulcers that caused excruciating pain and were complicated by comorbid conditions. Ms. Loo was not afraid to let us know how angry she was about having been mis/undiagnosed for so long. I don’t think any of us blamed her there (I’ve learned an enormous amount this year about the importance of identifying and treating PG properly and early). So when students and doctors rotated through her room--her distended abdomen on display for hoards of people coming in and out--she made sure to use her time wisely. Ms. Loo commanded that room and the attention of those passing through--rather than asking her questions, she told her own narrative from the get-go. Her biggest take-away? Listen to your patients when they tell you something is wrong, don’t dismiss them, and don’t tell them you understand. My job was to stay out of the way, make sure no one took photos, aid her comfort, and help with wound care. I stood in the corner secretly cheering her on (YAS GURL, U TELL EM) trying desperately to hide my sheepish grin. My inner ePatient was exploding with pride. 

The hour-long event exhausted her. I had told her before the event started that if at any point she needed to take a break, to give me the sign. She persisted. And when the crowd thinned, we closed the doors and got to work on dressing her wounds and getting her upright. While her partner and I cleaned up the thick yellow biofilm, covered sterile telfa in enzymatic ointments, Ms. Loo imparted lessons to me about how to treat patients properly and about the woes of biologic medications and infusions. 

In that moment, I made a judgment call. I shared. I don’t really remember what I said--it wasn’t a lot (there is a big difference between unloading and sharing). But I let Ms. Loo know that I too, had been in her shoes re: biologics and that our staff and myself will always advocate *with* her. It was freaking terrifying and while I don’t remember what I said, I do remember shaking, wondering if it was appropriate to share. But it felt right. With my hands literally in her wounds, we laughed together about autoinjector pens and chronic pain. The intimacy of that moment will never be lost on me, and how privileged a position I am in to share such a moment with someone.

We got her upright, and when Ms. Loo gave me an enormous hug on her way out the door, she whispered to me, “you understand.” I walked them out of the college of medicine, went to my car parked in the closest handicapped spot, and cried for every time I’ve wondered if I could physically make it through the day, for every patient who endures what Ms. Loo endures on a daily basis, and cried knowing full well that the culmination of events that brought me to share this profound moment had aligned just so as the perfect reminder that this path is exactly the one I need to continue on.

**Disclaimer: all possible patient identifying info changed for HIPAA purposes.**

[chroniccurve]

Thoughts on death and derm: See you later, Mr. D

My favorite patient died. I suppose you’re not supposed to have favorites, and that is not to say I treated any other patients differently (I didn’t) in my time at High Risk Derm Clinic. But the truth is that there are some people you connect with more than others, and that’s true in or outside of the medical field. Mr. D was one of these people, and it feels like we lost a friend. The first time Mr. D came in, he ripped our staff a new one for the wait time. Two new residents had just started working with us and our wait time was over two hours, and all of us were working to the bone to calm the chaos. Our group soon dreaded his twice-weekly appointments; his lengthy treatment sessions made his rude disposition and dissatisfaction difficult to swallow. Somehow, I got his chart every time. I quickly learned that Mr. D went nowhere without a newspaper, so each session I would ask him the most interesting piece from that day’s paper. We talked politics (0/10 would not recommend doing with patients, by the way), he insisted upon attending the Trump rally when it came through town to people watch with some popcorn (and invited myself and Doc to join him). He told me about his many years in public service (I later learned what an incredible and literal hero he was in the eyes of Big Southern City), what it meant to lead a team as a black man in Southern City with Racial Tension, and though I did most of the listening, I did answer his endless questions about Canada. He shared stories about his wife of 50+ years, about their marriage and kids, and gave me little pearls of wisdom about how to treat others, how to treat myself, and, of course, how to vote. He told me not to become “a blob” after I get married, to stay off the couch, and he had some strong opinions about the type of man that he presumed bought me the new watch I wore to work one day (!). Mr. D taught me the right way to make purple hull peas, and never let me forget that the clobetasol ointment we used stained his wife’s antique furniture. As the months passed, Mr. D shared with me the more intimate details of his declining health, he told me how it ‘wore out his nerves’ to come to our clinic and make appointments despite them being ‘the least of his worries.’ Relaying his anxiety to our head nurse, our team brainstormed ideas about how to schedule his appointments in a way that was less imposing, and as the months passed, he started to improve and was better able to take his medication. 

I went from “Doc’s nurse” and “this young lady here” to “Em,” and he started acknowledging the rest of our staff with a smile and well wishes on his way out of the clinic. I looked forward to our sessions each week, much to the bewilderment of some of our staff, and was secretly a little disappointed when a week went by without a visit from Mr. D. Maybe these details are meaningless, but the time spent with Mr. D had such a remarkable impact on me. Our growing partnership renewed my faith in patient care that isn’t devoid of human connection or empathy, which was often a needed reminder when High Risk Derm Clinic felt like more like High Risk Derm Factory where we tried to cram in an excessive number of patients per day. Mr. D reminds me that it is possible to take all of the advocacy work, all of my experiences with chronic illness, all of those ignite speeches and late night Stanford brainstorming sessions, and make them a reality—one person at a time. He reminds me that “patient-centered” is only a buzzword or gimmick should we let it be. Perhaps most importantly, he reminds me what an incredible privilege it is to learn about and learn from each other in medicine, both as a patient and as a (hopeful) PA.  I will never forget his “see you later, Em” echoing down our hallway, and I’ll do my best to hold onto the lessons he taught me—about life, about love, and about medicine. See you later, Mr. D. **Details changed to protect patient privacy. HIPAA is a thing.**

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A (very) bad rheum day means studying in bed with my sweet conehead Bruce. He makes the bad days so much easier to endure and makes bed rest a lot less lonely. :)

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MY CHRONIC PAIN SECRET: A SUBMISSIONS PROJECT

A few weeks ago, I had the pleasure of hearing from Christopher Snider, fellow MedX ePatient/advisor. I’ve quoted his blog a lot lately; Chris has a way with words that is unmistakably genuine and resonant, and I find that this translates entirely into every project I’ve been fortunate enough to work with him on, from panels to podcasts. This is particularly true for a long time project of his, My Diabetes Secret.

I’ve watched and read as the diabetes community went through up’s and down’s, and found it fascinating to see the dynamic expressed in this way.

The outlet My Diabetes Secret became to the diabetes community–this easy access, open stage of sorts to put it out there without the risk of a face or a name–was transformative.

So much so, that he is expanding. Which is where I and you come in.

My Pain Secret. The same platform, the same concept, only for those of us with chronic pain.

It is tumblr-based and extremely easy to submit your thoughts anonymously. Feedback is important to us, so if there’s something about the site or project you think is particularly problematic, feel free to send an email and let us know. There is also a list of chronic pain-related resources on that site–feel free to send us any you think might be helpful to add. Maybe it’s a safe place where you can vent. Maybe it’s just a place where you come to have that “me too” moment. Ultimately, it requires all of our voices together to shine a light on what it is life to live and coexist with chronic pain, and we hope to give you the opportunity to do just that and share without shame.

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Every Time I Use an Elevator

Today I got on the elevator in one of our main classroom buildings, one of the largest on campus (aka Huge Classroom Building/HCB). I got on the elevator with a professor and two other students. While on this elevator, we find ourselves talking about elevators and how this professor taught at a university where the only people who could use the campus elevators were people with keys, including faculty and handicapped students. 

A fellow student in the elevator with us got off on the second floor, and before the door even finished closing, the professor makes a comment to me and the other guy in with us about how she didn’t “look handicapped enough to take the elevator up one floor” and how this was his “biggest pet peeve.” 

For the record, I’ve had a really painful day. Emphasis on really. So of course, I looked at him and said “well to be fair, I have arthritis and I take the elevators up one floor, and nothing sucks more than when someone has the nerve to make that comment while you’re in the elevator with them.” I think I shocked him, because he then followed up with “well she didn’t look handicapped.” So to make it worse, I said “Yeah, but neither do I. You never know what someone’s dealing with.” He was jaw-on-the-floor caught off guard, mumbled something about how what I said was true and how I “do look young,” and I proceeded to get off on the third floor more than slightly irritated. The guy with us in the elevator said nothing. 

Now I am sitting outside of these elevator doors writing this. There is nothing more infuriating than this notion that all disabilities have to be visible. There is nothing more annoying than a constant reminder that whenever I take the elevator up one floor, people in it are judging me and/or making comments the second the door closes behind me. 

So if you’re one of those people who finds yourself in that sort of thought process, please stop. 

You never know what someone’s dealing with or going through by a 40-second interaction in an elevator. Maybe it was leg day yesterday, maybe they have arthritis, maybe they’re just tired. 

Keep your judgments to yourself.

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I am a medical student living with what is most likely something called undifferentiated connective tissue disease. I worry that the pain in my back, hips, knees, and anywhere else it feels like being on any given day will prevent me from finishing medical school, or will prevent me from finishing residency, fellowship, or even just practicing as a doctor. I worry that one day I will be disabled, the mind and hands I know are capable of helping other people with medical problems trapped inside a body that just can’t. I fear for myself, I fear for my career, and I fear for my future.

Share Your Secret | These Resources May Help (via mypainsecret)

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Hello World

I’ve seen what My Diabetes Secret has done for the diabetes community. Every time a new secret is published, a resounding “me too” in likes and reblogs follow. Bringing these internal, emotional struggles to the surface has shed a new light on what it’s really like to live with diabetes. Managing that disease is more than just checking your blood sugar and taking your medication, and more and more people are starting to recognize the larger psychosocial challenges that come with living with a chronic disease.

With that in mind, I sought to expand the concept of My Diabetes Secret to other chronic disease communities. First among them is the chronic pain community.

Keep reading

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Introducing My Chronic Pain Secret! Check it out.

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College and Chronic Illness: Professor Etiquette

Going into university, the teacher-student relationship changes. No longer are you one of thirty kids that your teacher knows by name; you are now a number and, typically, an unfamiliar face in a crowd of up to 300+ other students. 

For freshmen entering university and/or those of you with a new diagnosis of a chronic condition, the professor-student relationship takes on an entirely new importance. While you may have been able to escape getting to know your professors prior to illness, now it is paramount that you create this relationship.  

Office Hours. Know them, use them, and introduce yourself to your professors within the first week or two of the semester. Let them know you’ll be in contact with information from your school’s disability center, give them an idea of who you are, and tell them you look forward to speaking with them again shortly. Ultimately, you want them to remember who you are. Sending an email prior to the first week (week before is a good time frame, as they’re likely to have an idea of their busy schedule and you of yours) or during the very first week of classes and asking to arrange a convenient time to meet is important.  

You are not required to disclose the nature of your condition. While you are required to disclose that you have one (and should via your school’s disability resource center, something I talk about here), you do not have to explain what your illness entails. However– assuming you feel comfortable doing so–giving your professors an idea of the challenges you face may help them understand, have more empathy, and accommodate you better.    

Out of sight, out of mind. Don’t just go to your professor’s office hours once to introduce yourself; go multiple times throughout the semester. Ask for help when you need it, discuss concerns when you have them, and remain a familiar face. And go to class. Seriously, as someone who didn’t go to class nearly enough…just go.  

Show Your Appreciation. Always let professors know how much their help is appreciated. Handwritten thank-you notes are the perfect, personal way to say thanks. Don’t just send an email. Protip: a Starbucks gift card for $10 and a handwritten thank you note at the end of a semester (AFTER final grades are put in) is always, always a great idea.  

Dealing with a professor who is not understanding is, unfortunately, not uncommon. Avoiding these professors is key.

Research your professors before you choose a class. Look up your professors on ratemyprofessor.com. Look for consistent reviews. There are always going to be students who didn’t try, didn’t attend lecture, and then blame the professor and write poor reviews. Disregard those sparse negative comments. You want to look for well written, understandable, consistent comments. Protip: your university likely has course evaluation scores and pass/fail percentages in a database somewhere. Students DO have access to this information–if you can’t find it online, call the registrar and ask where you can access it; that information/feedback is valuable!   

Kill ‘Em With Kindness. You catch more flies with honey. Use kindness as your first plan. Refusing to accommodate a hard working, present, and kind student is much more difficult than refusing to accommodate a student who does not care and who seems to be abusing disability accommodations. This also helps when kindness doesn’t work and you have to get a higher power involved: if they know you are an honest, sincere, diligent student, your professor is going to have a harder time blowing off whatever higher power comes down on them. I speak from experience.  

Don’t Take No For an Answer. Kindness didn’t work? Now it’s time to put your bitch face on (expletive necessary). You’ve heard that the squeaky wheel gets the oil, right? It’s true. You have to be willing to stand up and make some noise. If you have the proper documentation, a professor does not have the right to deny you these university-mandated accommodations. Go directly to your disability center and meet with whoever drafted your accommodation letters (which you should get first thing). Explain which professors refuse to accommodate your needs. Be explicit and clear in describing what your professor(s) refuse to help you with. If your professor refuses to accommodate even after your resource center contacts them, then it’s time to move onto the dean of undergraduate students/affairs, and so on. Do not take no for an answer, even if that means going all the way to the school’s president.

If All Else Fails… consider dropping the class and taking it with another professor. Your education and well being come first. If that means waiting a semester to get an A in a class rather than an undeserved C/D/F, so be it. 

Give Feedback. Go online and write your own review of your professors each semester. Your feedback can help future students with similar struggles avoid or find a particular professor.

Remember, you can assert yourself without crossing a line. University is what you make of it and there’s nothing better than when wonderful professors become mentors!

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Updated!

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First Day of School.

Tomorrow marks the first day of my last year of undergrad. Five and a half years. Two degrees. Three minors. Four surgeries, countless scans, over 800 injections (let that one sink in; I did the math) over the past two years alone, dozens of infusions, from wheelchairs to running trails...

It’s been an unbelievably long road. When I first got sick, I really wasn’t sure I’d ever attain the kind of quality of life I have now. I’ve had a rough time lately; I’ve taken more pain meds this summer than in the past year, and that has had me pretty bummed. But, when I look back at how far I’ve come, it’s okay. You know? Tonight at least, it’s okay. I’ve worked so hard to be here. I’ve failed six classes. I’ve fluctuated 70lbs. At one point I cut literally all of my friendships off and dove into intense therapy to work through so much to get to the head space I’m in now with my chronic pain. So tomorrow isn’t just the first day of school; it is a celebration. Because I truly wasn’t sure I’d get here, and I often thought that if I did get here, that I would be unsatisfied, bitter, and still grieving for the college experience I thought I’d never have. 

But I’ve gotten to experience it all. All of those things I wanted to find and fall in love with here at Florida State, I purposely took a nose dive right into last year. Research, professors and mentors, rushing LSH, dating, new people, new places, new experiences. It has been amazing.

I know that a year from now, my GPA will not compete with those who have had four years with their shit together. I know that it puts me at a disadvantage numerically. But you know what? It reflects that I have done my best to fight through hell and back and keep going. There’s no guide book for surviving undergrad while enduring a medical hell (though we’re working on it), and all I can say is that I have done my best regardless of what my transcript reflects. I like to think those life experiences as a patient will make me a more empathetic and curious provider, and I hope PA schools/grad schools will see that. Maybe not. Either way, I am lucky to be here. I am grateful to be here. 

Here’s to a wonderful year, and here’s to everyone starting fresh this semester.  You got dis,

Em

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I’ll See You When I See You.

Sometimes I come back here and I still try. I try to write. To date, I have 212 drafts saved and unpublished. But right now it feels forced. It’s not that I don’t have updates or things to say--I do--but the words don’t come quite the same way. The personal anecdotes seem more personal, harder to share, difficult to adequately and eloquently express for ~35k people to look at.

I’ve spent an enormous amount of time trying to figure out how to let my advocacy work and writing evolve along with me. Lately the urge to compartmentalize has been overwhelming. But that’s the thing with this kind of work: you can’t really compartmentalize it. You don’t leave it behind after 5pm every day. It doesn’t get tucked away in a filing cabinet or Google doc. The lines are completely and totally blurred between the personal and professional when you’re writing, speaking, or working as a patient advocate. Instagram was where I saw this most. As I spent more time focusing on people and experiences outside of my health issues, I felt myself feeling like I couldn’t or shouldn’t post health-related photos. At the root of this? Insecurity. Maybe even shame. New people, new friends, new colleagues and mentors, new significant others. It’s hard to put yourself out there like that. I felt like every time I gave out my Instagram, I needed to give it out with a disclaimer. And that’s not being true to myself, or any of you. The more dates I went on this semester, the more I realized that I couldn’t escape a google search. Which sounds weird and I don’t say that to be pompous, but nothing was weirder than going on a second date with someone who had already watched my MedX Live videos and speeches. I don’t really know what this means. I know that I’ve become a more private person lately. A large part of this is just self preservation (which I am okay with), but some of it is insecurity. And I need to work on that; my illness is going nowhere and I refuse to carry shame. But there’s also burn out at play here, too. Clinicians are not the only ones who experience this. I am tired. Truly. I am tired of injections and medications and fluctuating 40lbs from Prednisone and seeing specialists and scans and being probed and poked, no matter how stable my health may or may not be. So the last thing I want to do is then go and write what I am so tired of. I don’t want to write about it; I want to give the energy I do have to the people and places in my life, and seek out new experiences while I have the physical means to do so. For so many years, most of my identity was rooted in my illness and advocacy work. That’s all I had for a long time. I’ve done some beautiful things with it, all of which I am SO proud to have been a part of (and hope to be a part of in the future). But that’s not who I am.  So this time to explore what else makes me, me feels crucial to a soon-to-be 24 year old who spent ages 18-21 at a standstill--it was like my life was on pause. Christopher Snider, fellow MedX ePatient/MedX advisor  wrote a blog post that sums it up beautifully:

As my time, energy, and focus are required elsewhere, the urge to find something to post on this space has declined. For the longest time I felt obligated to maintain some kind of illusion that I was a reliable beacon for the diabetes community evidenced by a new post every weekday. Even if that meant sharing a cat picture and writing 12 words underneath it, you could count on me. To an extent, this can no longer be the case.

I’m not leaving. But I can’t pretend to be the diabetes advocate I was last week, last month, or last year. I just can’t. This means that I have to be more judicious with my time, and that ultimately means this blog cannot function as it has in the past. So, when I have something to say, I’ll say it – here. And when I say it, I’ll do my best to make it worth your time to read. But I won’t be here every day. And I’m going to be okay with that.

I’m hoping that by taking the pressure off myself, that some of the words that used to come so easily find their way back to Chronic Curve. I like to think it will make me a better advocate, or at the very least, I certainly hope it will. You can still tweet me, but if my DM’s or Tumblr inbox messages go without response, please just give me some time.

I will see you when I see you,

Emily