Q:How do you talk about your condition so easily?
The short answer? I don’t. It’s not easy at all and honestly, I do not know many advocates or bloggers that share their lives with chronic pain and chronic disease easily.
Long answer? I cannot tell you how many times I write difficult posts and let them sit in my drafts for months at a time because of how vulnerable it makes me feel to post them. Those posts with intimate details of disease? Posts about finding hope, about losing hope, about depression and sadness that come along with chronic pain? Those were all written with trepidation and tears. Sometimes, I have to step away and take a blogging break completely. No part of writing about my life with these diseases is easy. And it’s even harder to talk about it in person. Outside of my circle of close friends, it’s not something I really talk about at all. Even with my friends, it’s not often that I talk seriously about it; usually we just poke fun and laugh about whatever I’m struggling with.
The thing that allows me to keep on blogging is knowing that my experiences help people. If just one person feels even the slightest bit less isolated as they go through some of this, it’s worth it to me.
I know I have stories that are powerful enough to spark change (I firmly believe all patients do). Some days I don’t have the ability to share what’s really going on. I worry that I complain too much. I worry that I am too negative. I worry about over-sharing. I worry that I am not sharing enough. I worry that I come off as pretentious. I worry that sometimes I sound too bitter.
Have you figured out that I worry about everything?
I also have pretty strict boundaries when it comes to what I am willing to talk/write about. I don’t really discuss my struggle with symptoms of endometriosis of the bowel, for example—it’s too difficult and far too personal for me to share with the world. I refrain from discussing family, friends, relationships, or sex often or in much detail when I do discuss it. There’s a reason for that: those are private, treasured parts of my life that are not easy to share with thousands of people (including everyone from friends to professors).
I don’t know if you were able to watch the video I posted from Stanford, but we actually talk about this issue and how we decide what we share or talk about. It’s worth watching if you get a chance :)
I hope this answered your question. There is not really a simple answer. Ultimately it comes down to knowing that I have the ability to create change and a dialogue, and that’s more powerful than the anxiety and uncomfortable sense of vulnerability that accompany being candid about chronic disease and chronic pain.
Feel free to email me if you are struggling with this, and remember to take it a day at a time whether you’re blogging or just trying to handle day-to-day conversations.
Medicine X: A Catalyst for Change
Two weeks ago, I had the honor and privilege of being in attendance as an ePatient scholar at Stanford University’s Medicine X. It was MedX’s patient-centered structure that grabbed my attention a year ago, when I sat from home, curled up in bed watching the 2012 live stream. I live-tweeted the words and concepts introduced before me, completely riveted by the passion, the production, the people.
I needed to be there. A year later, I was sitting amongst 30-something other incredible epatients in a room with people from all walks of life. Doctors, health care professionals, students, press, designers, biotech.
The three day conference was a literal down pouring of ideas and information: sociological, psychological, biological, technological information. It challenged my advocacy efforts, my ideas, my unconscious biases and stereotypes, my knowledge (or lackthere of in many areas). It challenged my past, broke down my walls, and propelled me forward towards a better future in advocacy work. It challenged me to step way outside of my comfort zone, to raise my standards, to believe in a hope that seemed out of reach prior to MedX. We planted the seeds for incredible growth in a matter of 70-something hours. Many of us walked out of the conference with new goals, dreams, career aspirations, and certainly a renewed sense of inspiration and passion.
But what pulled at my heart strings, what blew my mind over and over again, what I walked away with, and what I now have four poorly constructed drafts about sitting on my desktop—the power of the patient experience. That power is, in essence, the heart of Medicine X.
All of the technical talk, the science talk, the research and design discussion—it ultimately revolved around the patient or improving patient care. From Sarah Kucharski’s ignite talk that sparked a complete silence (at a conference where the sound of fingers on a keyboard live tweeting you is the loudest applause, mind you) that shook all of us to our core, to the buzz between clinicians and ePatients that filled the halls during coffee breaks (post coming soon about this), to Dr. Leana Wen’s beautiful presentation (recorded, but has not been posted yet), which discussed how we are in desperate need of moving back to the basics in health care, how we underutilize the single most powerful tool: the patient narrative.
If there was any ePatient there in attendance or at home watching that was not sure of their power prior to MedX, they left with that sense of strength and purpose tucked in their back pocket.
Medicine X is a catalyst for change. We had (and are still having) the discussion, encouraging brainstorming, innovation, better dialogue. Each year, it grows larger. In fact, the level of social media participants at MedX grew by 169% from 2012 alone. But this is where my biggest hangup is in regards to the power of the patient narrative. We have to move beyond the hypothetical, beyond the conversation.
It’s time to act. To move the discussion into medical education: teach our future physicians, nurses, PA’s and EMT’s, pharmacists the power of the ePatient partnership. To teach current healthcare professionals the power of the ePatient partnership. That means allowing ePatients to speak to classes, to consult on programs, to participate in conferences and workshops that are leaving ePatients out of the picture. It means having more panel discussions with physicians, pharmacists, and patients on stage. It means creating partnerships one patient, one doctor at a time. It means changing the very rigid culture and curriculum of medicine itself—certainly an incredible undertaking, but forgive me if I do not believe that I am idealistic in thinking we have the power to create a paradigm shift (more so than we already have).
Every patient has a story worth sharing. Every physician has an opportunity post-Medicine X to create something new, extraordinary, and revolutionary. Let’s keep the momentum going, bridge the gap, and work—not just talk—together.
Buy a Bracelet, Support Arthritis Awareness + Arthritis National Research Foundation!
They’re baaaack! And just in time for World Arthritis Day! It’s taken quite some time, but you can finally purchase Cure Rheumatoid Arthritis awareness bracelets again! Now in two choices:
- Purple and blue Cure Rheumatoid Arthritis bracelet
- Two-toned blue Cure Rheumatoid Arthritis bracelet
Both are $5 and half the proceeds will be donated to the Arthritis National Research Foundation (the other half go directly to manufacturing costs—I do not profit a single cent from these bracelets).
We will be making our first donation to ANRF on January 1st, 2014! Let’s see how much we can raise in the next 80 days!
EDIT: No UK or Canadian orders for the next 24 hours. We’re updating shipping costs (which is built into the $5 for US orders), so please keep that in mind until I update again
World Arthritis Day: October 12, 2013
October 12, 2013 is World Arthritis Day!
Supported by the European League Against Rheumatism (EULAR) and Arthritis and Rheumatism International (ARI), World Arthritis Day brings together international organizations, patients, caregivers, and supporters to raise awareness of the over 200 arthritic conditions, systemic/autoimmune arthritis included.
There are so many myths and stigmas associated with arthritis as a whole—this day gives us an opportunity to raise awareness and let others know that it is not just arthritis.
Get involved and learn more here, and don’t forget to publish your own blogs, reblog, and retweet!
Looking for an arthritis-related organization to support? Check out this resource page for a list of great organizations working towards a better understanding of, a cure for, and better treatments for rheumatological diseases. Reblog/retweet with more you’d like to see supported/added.
So if you were to ask me what I gained from Medicine X 2013…the first things that come to mind are that I am more than my diagnosis […] I was able to witness firsthand the incredible difference between surviving and living. Living involves integrating your disease process into your life and then leading the life you want instead of the life you have. I have seen the power of an informed and empowered patient and that a small group of people will change the world…we may just have to take small breaks to rest.
Let People Care: How Medicine X ePatients Taught Me Not to Fear My Vulnerability
I wrote yesterday that more than the experience of Medicine X, it was the people that changed my life this week.
As is the nature of Autoimmune and Autoinflammatory diseases, there is no telling when a health crisis is going to strike. As the stress (both good and bad stress) of preparing for this experience built, so did my symptoms.
So when I had a travel day from hell, in which there was no ramp to get onto the plane, I nearly missed my layover, and Charlotte airport called security on me for no reason whatsoever, it was no surprise that my diseases went into crisis mode.
A kind of crisis mode that I had never experienced before: my legs swelled to 2-3 times their normal size; my spleen went into overdrive. It was excruciatingly painful. By the time I had walked at least two miles through San Francisco, had a public transit nightmare in which there was a fire on a train route and it took us hours to get to our hotel,
I was in tears (from pain- and you guys know it takes a whole hell of a lot of pain for me to reach tears) in front of total strangers. I was losing feeling in my feet from the sheer amount of swelling.
Britt, the Hurt Blogger, called me by chance when I was mid-hysterics in my hotel room bathtub trying to get swelling down in my legs with cold water.
Within five minutes, Britt, Nick Dawson, Sarah Kucharski (AfternoonNapper), and Liza Bernstein were at my door. Open arms, open hearts. Nick quickly took care of a hotel mix up— I mean took care of absolutely everything. They grabbed my stuff, literally grabbed me, and walked me to a new room. Britt arranged a fridge being delivered to store my Kineret. Sarah took to the front desk to get industrial size trash bags to fill with ice from the ice machine. They got me into bed, wrapped my legs and body in ice, tucked pillows and blankets under and over me where they needed to be. And then, they made me laugh through some of the worst pain I’ve had in a very long time. Total strangers. Complete and utter selflessness.
I write from a place of vulnerability, sure, but being that vulnerable in front of people is not something I am used to. In fact, I’d say I’ve never been vulnerable like that before, sans a few hospital visits. Letting someone take care of me, letting people see me absolutely tremble and shake from pain so severe I couldn’t stop the tremors…that is not something I have let someone see before. Not friends, very rarely family.
This was not how I anticipated meeting my fellow ePatients.
And yet, I’m so glad it happened the way it did. I am honored to have met such giving, kind, beautiful people. They taught me a valuable lesson this weekend: it’s okay to let people care for you. It’s okay to be vulnerable. It’s okay to need help. It’s okay to not be okay, not just online, but in person. It took the entire group of 30-something ePatients looking out for me to learn that I am not letting people in enough in my day to day life.
Eventually, my legs were too swollen for some of my dress pants and my dress shoes. I actually broke the pair of sandals that did fit. Sarah ran out and made sure I had both compression socks and slippers to wear to the conference (yes, I did indeed wear black fuzzy slippers to MedX). Britt took me into her room despite her own pain and set up ice baths for me. Kathy Kastner did the same. And you know what? We laughed the whole time. In some of the worst pain and most vulnerable I’ve ever been, we laughed. Sometimes through tears, but always with grace, understanding, and kindness.
When my bags of ice leaked and I couldn’t run to get my own, Brett ran and did it for me—no questions asked, before I had even a moment to ask someone for help. Emily KG and Nikki bent over backwards to make sure I was taken care of when I needed a hand. There was always someone checking on me. The MedX Staff volunteers wrapped my bare feet with ice mid-conference, then came back the next day to check on me when they saw me in the wellness room. Even Dr. Larry Chu, the astounding director of Medicine X who pours his heart, soul, and every ounce of energy he has into this conference, took the time to see to it that I had accommodations I needed. Unbelievable selflessness.
Joe, despite his own agony at being on his prosthetic leg for 10+ hours more than he should have been, carried my malfunctioning 50lb suitcase across the entire San Francisco airport. And when his pain peaked as we left MedX, I happily gave whatever pain medication I could to ease his agony. Laura, despite her own exhaustion and symptoms from Myasthenia Gravis and Sjogren’s, went into caregiver mode and had my back the entire time— I had known her for a total of 20 minutes at that point. She’s an incredible woman with an amazing story and a beautiful, giving spirit. Jody, a fellow panelist and cancer warrior, shared words of strength, wisdom, and love with me at the perfect time. I’m not sure she has any idea how profoundly she changed my life this week. Erin, fellow panelist and mother of a child with Cystic Fibrosis, went into mother-mode and was willing to get me to a pharmacy or wherever it was I needed to be when things hit the fan. Quite frankly, this post would be much lengthier if I went and tagged each and every one of the ePatients who carried me through this week, but the same sentiment extends to each of them.
The care we all gave to each other was unlike anything I have ever experienced (and I imagine ever will outside of MedX). I would have been in the hospital mid-conference instead of Monday had it not been for this group of people. We arrived in California strangers, and left as family. Everywhere you turned, someone was extending a hand. "How are you?" "No, how are you?” was the recurrent theme of MedX. Even now, as we’ve all traveled back to our respective homes across the country, we’re all messaging each other: How are you? Are you resting? what do you need?
It’s not about neediness. It’s not about incompetence. And that lesson is so beautiful, so necessary. I came into Medicine X incredibly guarded. It’s how I’ve survived and endured the past five years. It’s how I was raised; it’s the environment I’ve been living in. Truthfully, I felt terribly guilty about the care I needed this week. This talk of personal vulnerability and my past is not something I have not shared here on Chronic Curve, but was able to openly share with people this week: that guilt, shame, insecurity, fear of punishment at the hands of being vulnerable. I left Medicine X with that wall knocked down, less afraid of that vulnerability. I left that baggage at the door of MedX and I will be a better patient advocate for it.
The only way to give thanks to this amazing group of people is simply just to pay it forward. So pay it forward, I will, and I sure hope I can be a pillar of saving grace for the next group of ePatients in 2014.
Did you know that the economic cost of chronic pain in US is $600 billion, more than cost of cancer, heart disease, and diabetes combined.
Flooded With Love and Gratitude: Brief Thoughts Post-Medicine X
I’ve tried to sit down numerous times in the past 16 hours since it ended, to put some string of words together that could adequately explain everything I’ve just experienced and felt.
I am completely, utterly, 100% speechless. It’s going to take a long, long time for me to process this, and probably much longer before I write about it with any eloquence (so please keep that in mind if I take some time to digest. In the mean time, I’ll be posting videos/interviews/photos of the epatient presentations).
The people I was so fortunate to not just meet, but grow with, learn from, and create with what was created this week…
Sure, I got to network. Sure, I got to share my story not once, but twice at Stanford.
None of that matters in comparison to the strangers that became family this week.
None of that matters when I think about how I walked into Medicine X with a very limited type of hope—a hope for only making it through the next day, a hope that couldn’t stomach considering the next month or year—, and walked out with a kind of hope for the future that I haven’t ever had- a spark so strong, a flame so bright that I never knew could ever exist. A love and connection with people I have never had with anyone before. These people and this experience have changed my life.
I witnessed selflessness, resilience, courage, strength, humor at the hardest of times, vulnerability, open minds and open hearts, and an electricity in the room that cannot be captured in words, photo, or video. I just…
I am honored to have sat beside all of the epatients this year. To call them my friends and family. To have been on the receiving end of their support, kindness, courage, and love. I feel privileged to have heard their stories.
My heart is flooded with gratitude, love, kindness, inspiration, wonder, amazement, and of course, sadness that it’s over.
But really, it’s not over. It’s just beginning.