This is a guest blog from Emily Kramer-Golinkoff. I was lucky enough to meet her about a year ago & even luckier that she asked me to help her make a big impact with her final thesis for her Masters in Bioethics. Her story, insight, and strength are worth your time. She’s hoping to leave a big mark in understanding how to leverage the asset of empowered patients to advance science and healing. She’s working to integrate patient communities more intimately in the health system. Her post is about why she chose to be an empowered patient and it’s fairly clear why she’s attracted an entourage…
Truth be told, belonging to a disease community isn’t my clique of choice. An artist community, a running club, even a yogi enclave sound more appealing. But I’ve learned that when our hands are tied, we’re better off building muscles in our legs than spending all our energy trying to wrangle our hands free.
That’s the philosophy I’ve embraced as a 28-year-old with big eyes, a bright future, and an advanced, incurable and fatal disease called Cystic Fibrosis. Cystic Fibrosis (CF) is a progressive genetic disease that primarily affects the lungs and digestive system. It causes thick mucus to build up in the lungs, leading to life-threatening infections.
My winding path to patient empowerment started as a headstrong, sassy little girl who clashed with my pediatric CF clinic’s authoritative culture. My perpetual questions of “why?” and efforts to integrate my disease into my life were met with disdain and labeled “difficult.”
That same attitude led me to an online CF community in my mid-20s that had been, unbeknownst to me, thriving below the surface for years. It was a community of people with CF who wanted to grab the reigns of their own health and care—just like me. They swapped stories and shared treatment ideas. They learned from their successes and failures. They understood and supported each other. Mostly, they asked lots of questions. This clique equipped me with tools and empowerment to become an active, engaged, and respected partner in my health care and research.
Patient partnerships go two ways though. Fortunately, I found an adult CF clinic that nurtures my desire to partner in care, respects my need for an enriching life that doesn’t exclusively center around CF and embraces my never-ending questions.
The online CF community also opened my eyes to the need for fundraising. In December 2011, my family, friends and I formed Emily’s Entourage, a nonprofit organization that raises funds to help cure CF. Rather than stand by as I got sicker, we could accelerate research and grasp on to hope through fundraising. Affecting only 30,000 people nationwide, CF is an orphan disease, meaning drug development is an unattractive business venture for pharmaceutical companies. Therefore, funding for new CF treatments relies on individual donors. Money funds research and research holds the only hope of saving my life and my CF compatriots. Emily’s Entourage has raised nearly half a million dollars. We have worked with the national CF Foundation to expedite research on my mutation and the bacteria infecting my lungs, both of which are “uncommon.”
Beyond the personal empowerment I’ve gained and the platform that Emily’s Entourage has provided, I’ve had the chance to start making an impact at a bigger level. This year, my siblings and I gave a TEDx talk on youth activism and I shared my story with over 500 people at a CF Foundation gala. I’m also serving as the only person with CF on a communications team as part of the CF Foundation’s five-year strategic planning. These opportunities allow me to channel my hate for CF towards putting an end to a disease that has wreaked havoc on my life and my family, and that has torn too many beautiful people from this earth too soon.
CF may be the binding on my hands, but these opportunities are the muscle-builders for my legs. The truth remains that I wouldn’t have chosen to join a clique where a faulty gene is the membership ticket, average lifespan is in the mid-30s and everyday life consists of lung infections, digestive problems, hospitalizations, hours of daily treatments, and scores of pills. I wouldn’t have picked it, but I don’t get that choice. My choice is how to deal with it and I choose to be a partner in my care, I choose to be a partner in my research, and I choose to be a proud member of the ever-inspiring CF community.
5 Tips For How You Can Become An Empowered Patient, Too
- Demand to be a partner in your care. Nobody has more stake in your health care than you. Equip yourself with knowledge to be your own best advocate and find a health care team that values your partnership in care.
- Always ask questions. Don’t let anyone quiet your hunger for information or answers.
- Seek out a community that understands. Connecting with people who are going through similar experiences empowers you with a wealth of information and support.
- Channel negative emotions into productive outlets. Don’t waste time or energy on things you can’t change. Focus on and pursue the things you can do.
- Find beauty on unexpected paths. Illness causes unplanned twists and turns. Feel the pain, then shift gears and move forward. Unexpected paths can end up being the most beautiful.
Emily’s Entourage is a 501(c)(3) organization that raises awareness and funds to help find a cure for Cystic Fibrosis (CF). Nearly 70,000 people worldwide with CF are waiting with bated breath for life-saving breakthroughs. We’re mobilizing friends, families and communities to join Emily’s Entourage on our quest for new treatments and a cure. To learn more about Emily’s Entourage visit www.EmilysEntourage.org or find us on Facebook or Twitter
Jessica Lazarus says
Fantastic and beautiful guest post!
Susannah Fox says
“CF may be the binding on my hands, but these opportunities are the muscle-builders for my legs.”
– what a beautiful line, so descriptive of any challenge we may face in life and such an inspirational way to handle it. Love it!
I’m curious about how you found the adult CF community. Did someone recommend it? Did you stumble upon it online? If so, do you remember how?
Jamie Heywood says
Emily,
I love points 4 and 5 – these are critical and often overlooked. Many people live life without every truly understanding its meaning and its through positives energy and pursuit of beauty that we find it.
Thanks,
Jamie
Emily Kramer-Golinkoff says
Susannah — Great question! A little background info:
People with CF actually aren’t supposed to be with each other due
to cross infection issues. Therefore, until I joined the online CF
community, I had very limited exposure to people with CF. I didn’t
even know what I was missing. I learned about the online community
by stumbling upon a blog on Google Reader written by an incredibly
inspiring woman with CF who was a couple years older than me and
being evaluated for a lung transplant. I related to her so much and
at such a piercingly deep level. On top of that, I actually LIKED
her–not just as a fellow “patient” with CF, but as a person. I had
previously been hesitant to engage with the CF community. Honestly,
I think I was scared to watch people suffer and die at the hands of
my own disease and I wanted to keep CF compartmentalized so it
didn’t take over too much of my life. After lots of introspection
and reading about the enormous impact of the online CF community on
her life, I slowly started exploring. I was shocked to find a
THRIVING community of smart, motivated, supportive and interesting
people who all shared CF in common with me. Since then, my
involvement has increased significantly and it has been absolutely
transformational, but it all happened very gradually. Embracing my
membership in the CF world has definitely been a very emotionally
charged process for me, but I’ve come a long way and I’m so
grateful and honored to be where I am now as a very active member
of such a wise and wonderful community of people — people who just
so happen to have CF.
Susannah Fox says
Thanks, Emily! Your answer gives me hope.
The research I do focuses on how people use technology to connect — with each other, with information, with institutions. One core finding is something we call “peer-to-peer healthcare” — the learning that happens when people who share the same health concerns find each other. But the question I can’t always answer is “how?” How do people find each other? For some, it’s easy — if there’s an established community, national organization, etc. For others, it’s not. Your answer shows me a path I hadn’t seen before, at least not in the same way. Keep shining a light on that path!!
Coby Kramer-Golinkoff says
Awesome blog post!
Emily Kramer-Golinkoff says
I think full immersion in peer-to-peer health care often happens gradually. A piece of you has to be interested enough to start looking — even if only a little bit and ambivalently — and then the vetting process begins. Full-hearted participation in an online disease community requires “acceptance” of your disease, and that often is a difficult, gradual and evolving process, or at least it was for me. There are so many entry points, but I do think blogs seem to be a very common one – at least in the CF community. Now you’ve piqued my curiosity! I’m going to pose this question to my fellow CF community members.
Susannah Fox says
Wonderful! Please report back — or contact me directly if
it’s too much to share in a comment: sfox at pewinternet dot
org
Julie Borkowski says
Emily, I am a Cf Grizzly Mama, but your philosophy mirrors
mine. I cannot tell you how many times I have been labeled
difficult too. My child has Down syndrome and Cf, so my experience
as a parent is different from pretty much all Cf parents. Other
parents can be judgmental, and it seems the trailblazers like
yourself are the ones I really relate to. In the Cf community, I am
often labeled as different, difficult, and heavy handed when it
comes to caring for an 8 year old with Cf. People dont understand
things are different for us, but adults with Cf seem to understand
us better. I hate having to explain myself every time, and I too
have yearned for a group that understands. Anywhoo, I wanted to
share something with you. Here is my philosophy in a paragraph that
I adapted to fit (I think it fits you too): The Diary of Cf Grizzly
Mama I am one of the crazy ones. A misfit. A rebel. Some call me a
troublemaker. I am a CfMama who sees things differently. I’ve never
been fond of rules. When it comes to lung health I have no respect
for the status quo. You can agree or disagree with me, glorify or
vilify me. But the only thing you can’t do is ignore me. Because I
change things. While some may see me as one of the crazy ones, many
see genius. Because the people who are crazy enough to think they
can change the world, are the ones who do.
Toby Axelrod says
That’s a great blog posting; very moving and empowering. I
remember that little-girl sassiness of yours, and also your
sensitivity and insight as a tiny tyke. Today, your words, your
philosophy and activism can help many people who are grappling with
a “given” that’s totally unfair, that we hate, and that we want to
eradicate. You’re a talented writer, to boot! I find the discussion
inspiring as well. If I ever knew, then I forgot that people with
CF were deliberately steered away from each other for health
reasons. Today, virtual communities can help bridge that gap. Hugs
from overseas!