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A compilation of patient stories
BY EXPERIENCEExperts
2016
Published by Stanford Medicine
www.inspire.com | Experts by Experience
Table of Contents
Introduction: Brian Loew
Foreword: Connectivity Brings Knowledge and Hope
Letting Go of My Secret About Charcot-Marie-Tooth, “The biggest disease no one has heard of”
My Dance with Dystonia
Welcome to Your New Country: A heart patient on her “travels” with heart disease
Navigating a Rare Genetic Disorder with a Positive Attitude
Living with the Uncertainty of NF
On Growing Up with Chronic Illness: “I’ve never felt like I had ownership over my body”
“What Might They Be Interested in Learning from Me?” Tips on medical advocacy
Surviving a Betrayal of the Heart
Laughing Through the Pain: A comedy writer’s experience with chronic illness
Take it from Me: To improve compliance with psychiatric meds, we must educate patients
How a Kidney Cancer Survivor Became a Partner in His Care
The Importance of Providing Patient Support in the Face of a Life-Threatening Illness
About Inspire
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IntroductionWelcome to Experts by Experience 2016. We’re proud to note that this is our fourth annual compilation of columns written by patients and caregivers for Stanford Medicine’s Scope blog.
You’ll see in this compilation insights into an array of diseases and disorders--Charcot-Marie-Tooth, kidney cancer, Ehlers-Danlos Syndrome, spontaneous coronary artery dissection, neurofibromatosis, Crohn’s disease, deep vein thrombosis, bipolar disorder, Marfan syndrome, and more.
We thank Stanford Medicine blog editor Michelle Brandt, director of digital media for Stanford’s medical school. We also salute Larry Chu, MD, the Stanford physician and Medicine X conference organizer who continues to champion greater patient involvement in healthcare. Thanks as well to Jimmy Lin for writing the foreword to this report.
Finally, thank you to the guest columnists. By sharing your stories, you educate, inspire and empower us all. Together we’re better,
Brian Loew is co-founder and CEO of Inspire.
BY BRIAN LOEW
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Connectivity Brings Knowledge and Hope
Healthcare is rapidly changing, nowhere more rapidly than in the field of genome sequencing. It has unlocked the potential for diagnosis and revolutionized the medical approach and treatment of diseases, both rare and common. With this revolution, there is potential and that potential is called personalized medicine. Never before was there the ability to make medicine so personal as to look at an individual’s risk for disease based on their own genetic makeup, combined with lifestyle and environmental factors.
The traditional roles and relationships between patient and physician have radically changed over the years, altered in part by advancing technology. There is a complicated mix of stakeholders and perspectives on care, with a new voice taking a more prominent and needed role--the patient. Today, many more patients are educated consumers of their healthcare and now empowered by the Internet, where they access resources as well as a global network of support. Armed with knowledge, patients have more ability to ask informed questions and feel as though they are in control of their health as a partner at the table of their medical team.
Many individuals with a chronic medical condition have a feeling of isolation. As patient advocate Pamela Sloate says in her column here on page 7, “I didn’t encounter a soul with dystonia until my mid 20s. Often, I felt apart and alone. It was a challenge viewing my condition with any kind of perspective. How I wished there was someone out there who understood.”
This feeling of isolation is compounded by those living with rare or ultra rare diseases. Patients of this type visit specialist after specialist, given many tests, and unfortunately often--no concrete answers, so the feeling of isolation can grow. The diagnosis alone with traditional medicine could take years. Through DNA sequencing, the journey through diagnosis can be dramatically shorter.
Building a community of support through connections with others with the same condition can have a powerful impact. What these communities have in common is the ability to participate in discussions bridging the gap of distance in miles to fingertips online. And the sharing is in itself therapeutic. As rare disease patient advocate Jonathan Rodis says in his column on page 15, “I want to be a source of support and let patients know that they’re not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day health challenges.”
Stories shared through communities of individuals can provide insights into care, journeys and hope for the future. It may not be considered cutting edge, like genomics sequencing, but it is good medicine, and essential. Connectivity to others can turn sharing experiences into knowledge and hope.
FOREWORD BY C. JIMMY LIN, MD, PHD, MHS
C. Jimmy Lin, MD, PhD, MHS, is founder and president of the Rare Genomics Institute, a nonprofit research and advocacy organization. He is an advisor to the Patient-Centered Outcomes Research
Institute (PCORI), an independent nonprofit, nongovernmental organization.
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Letting Go of My Secret About Charcot-Marie-Tooth,
didn’t do anything to help the situation other than confirm that I had a serious disease that would continue to burden my me. I became a master of making excuses for why I couldn’t join in activities like volleyball, jogging, aerobics, hiking, walk-a-thons, and much more. Social events even upset me, and I became more isolated.
It wasn’t until my disease progressed to the point that I needed braces to help me walk that I could no longer keep my secret. While researching online for bracing options, I discovered the advocacy organization Hereditary Neuropathy Foundation. In finding the foundation, I realized I wasn’t alone: Many others felt as I did. I agreed to conduct a letter-writing campaign, letting friends and family know about the diagnosis and why I wear leg braces; doing so helped people understand why I made changes in my life in order to adapt to my CMT.
I even told my family doctor about my diagnosis – something I hadn’t done before and something that was a big deal since that meant it would be documented in my medical records. (I had been warned about the documentation of a pre-existing condition causing problems with insurance since the day I was diagnosed. Luckily, that’s not an issue any longer.) He took the time to research the disease and to listen to me when I shared how the disease had progressed and was affecting me, and he even offered some really good suggestions.
I’ve tried hundreds of different versions of my story to try to get people to understand. “I walk funny because I have Charcot-Marie-Tooth, also known as CMT. It’s named after the three doctors that discovered it: Charcot – Marie – Tooth. It’s a type of Muscular Dystrophy – but not really… It’s a genetic, progressive, neuromuscular disease that affects my legs and feet, arms and hands – and my diaphragm. It makes me tired. I’m sometimes in a lot of pain. Currently there is no treatment or cure. It’s just something I am living with.” Blah…blah…blah. I can see the person I’m talking with zoning out and I know I’m losing him. That’s hard because I’ve only just recently opened up about my CMT. I want my friends, family and the world to understand why I have struggles and limitations.
I’m 46 years old, and I was diagnosed at 13 years old. It’s been a secret I’ve kept hidden for 33 years.
CMT is by definition a rare disease, affecting fewer than 200,000 people in the U.S. Before the diagnosis, I tripped and fell a lot. When the pediatrician tapped on my knee to test my reflexes, nothing happened (I always thought he just must be seeing something I didn’t see because he looked puzzled, but then moved on without commenting). I was constantly spraining my ankles and bandaging my knees from falling so much. Finally, the CMT diagnosis explained it. But it certainly
“The biggest disease no one has heard of”
BY JOY ALDRICH
“I could no longer keep my secret...Doing so helped people understand why I made changes in my life in order to adapt to my CMT.”
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Letting go of the secret allowed me to heal and focus positively on my CMT and all that goes with it. I committed to a low-carb diet plan combined with very moderate cardio activity, and I’ve lost 41 pounds since August. I’m more happy than I’ve been in years, and I’m proud to now let people know all about CMT. I’m still working on how to best tell my story, but that will come in time.
Joy Aldrich of Seattle, Washington joined Hereditary Neuropathy Foundation as Advocacy Director to focus on the growth of HNF’s online support resources for CMT patients and caregivers and to advocate for patient recruitment in clinical trials through Global Registry for Inherited Neuropathies (GRIN), a patient clinical registry.
Together, we are both optimistic about the first potential treatment for CMT1A, the most common form of CMT. The drug is PXT-3003, which is being developed by Pharnext, an advanced clinical-stage biopharmaceutical company. I’m excited, and I hope to participate in the phase III clinical trial later this year.
When I opened up about my story, I thought I was letting go, but I was actually just
finding a different way to manage my feelings. The outpouring of support I received gave me the confidence and empowerment to get even more involved in raising awareness and money for “the biggest disease no one has ever heard of.” I’ve raised funds for HNF, written a few awareness articles, and participated in public service announcements for CMT Awareness Month, which is September.
For more on this topic, visit cmt.inspire.com
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My Dance with Dystonia
condition with any kind of perspective. How I wished there was someone out there who understood.
How far we’ve progressed over 40 years. Accessing health information is as easy as a trip to Google to enter a superhighway, rife with two-way traffic. Significantly, information flows from patients as well as to them. Abundant resources have ushered in an era of patient empowerment where the scientific community no longer holds a monopoly on medical explanation. In this era of cyber-connection, patients have stepped forward to educate themselves, chronicle their stories and support one another. Health activism burgeons across the Web. Online support networks abound, even for a rare condition like dystonia.
Launching my own dystonia blog (Chronicles of a Dystonia Muse) seemed a rash step until I found myself amid a veritable revolution of personal sites and health communities steering disability and chronic illness into the light.
As for me, it’s the same cha-cha-cha – stepping forward, then back. But in this age of openness, I’ve moved on to a better place deep inside myself, traveling untold miles along the road to self-acceptance. The fellow patients I encounter serve as an unending reminder that I’m not alone in my health struggles and lend me critical perspective. I may not move like everyone else but at my core I’m just like everyone else.
Pamela Sloate is a health activist who is involved in an array of awareness efforts. She moderates a patient support group, advocates for the dystonia community, and advances fundraising. She holds degrees from Brown University and NYU School of Law. Her blog is Chronicles Of A Dystonia Muse.
My dance with dystonia, a rare neurological movement disorder, has been a mangled cha-cha-cha with a wayward partner. Seems I keep taking steps forward then back — ever shifting my center of gravity — while engaging in a never-ending battle over who assumes the lead. In terms of mechanics, think of dystonia as a travesty of muscular timing orchestrated by the brain and executed by body parts moving off tempo. Imagine trying to master a new dance routine and your feet fly over the dance floor in scattered disarray. That’s dystonia.
Life took its unexpected turn when I was 8 and various body parts began to assert minds of their own. First my right arm insisted on straying off course when I wrote. Then the chaos spread to my left leg. In a creeping progression that eventually stabilized, a degree of unrest extended to all my limbs. Articulatory challenges gradually manifested. While dystonia is a game changer, over the years it’s become my second skin. I find it hard to recall time before dystonia.
When I was diagnosed in the 1970s, patients and their families exhibited far greater reluctance to broadcast their health conditions, especially when a disorder struck early in life. Disability was all too absent from the landscape, especially living in a small suburban town. We’d yet to witness the proliferation of the Internet let alone a grid of online media breaking down barriers and opening up lines of communication. I didn’t encounter a soul with dystonia until my mid 20s. Often, I felt apart and alone. It was a challenge viewing my
BY PAMELA SLOATE
For more on this topic, visit geneticalliance.inspire.com
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Welcome to Your New Country:
survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.Where once I had been competent, I now felt unsure. Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.
And my worried family and friends couldn’t even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was “normal” again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.
I also felt deeply ashamed that I just couldn’t seem to pull myself together as I struggled with what was ultimately identified as depression. Studies suggest depression strikes up to one-third of all heart attack survivors, yet remains largely unrecognized and ignored by cardiologists. At the 2015 American College of Cardiology conference, researchers warned: “Clinicians should assess all patients for
My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.
I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.
Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.
And that was the day I moved far, far away to a different country.
Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expect-ed of me, I have no map, and I desperately want to find my way home.”
Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from the hospital. I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.
Instead of feeling happy and grateful because I had
A heart patient on her “travels” with heart disease
BY CAROLYN THOMAS
“Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from the hospital.”
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Eventually, that’s what I did, too. I applied and was accepted for the annual WomenHeart Science & Leadership Symposium for women with heart disease at Mayo Clinic – the first Canadian ever invited to attend this unique community-educator training. I launched a blog and, as my health allows, have spoken to thousands of women about heart disease – our #1 killer.
My public relations friends tease me — this is what happens when a PR person has a heart attack. We just keep on doing what we know how to do best: writing and speaking and looking stuff up.
In this new country, I still have the same wonderful family, close friends, a nice home – but that busy career – and so much more – are gone. Rarely a day goes by without wishing I could go back to my old life. The reality, however, is that some of us living with chronic illness have been forced to permanently surrender our passports and will never return.
Welcome to the new country.
Carolyn Thomas is a heart patient, blogger and speaker about women’s heart health issues. Her writing has been widely published, including in the British Medical Journal. In 2012, she was awarded an ePatient Scholarship to attend Stanford’s Medicine X conference. This is an excerpt from an original post on Carolyn’s blog, Heart Sisters.
depression like any other cardiovascular risk factor such as high blood pressure and high cholesterol levels.” The distress of adjusting to such a debilitating change to one’s life is hard to describe to people who have never experienced it – those living with what psychologist Ann Becker-Schutte, PhD, terms “healthy privilege.”
I was referred to our regional pain clinic to address intractable symptoms, had to go back into hospital for another cardiac procedure, was newly diag-nosed with inoperable coronary microvascular disease, and then finally, gratefully (after I learned that asking for help is not a sign of weakness), I found a skilled psychotherapist to work with.
Susannah Fox once wrote that many people who are “dropped into this kingdom of the sick” band together and form posses like “pioneers sharing maps with newcomers.”
For more on this topic, visit womenheart.inspire.com
Susannah Fox once wrote that many people who are “dropped into this kingdom of the sick” band together and form posses like “pioneers sharing maps with newcomers.”
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Navigating a Rare Genetic Disorder with a Positive Attitude
am not inspirational. I am human. There are days when I feel frustrated, overwhelmed with the changes in my life, and even a little cranky. It’s OK to admit it, because I’ve got a family who loves me through all of it. If I seem a little quiet or snappy, you may be meeting me on an off day. We all have off days — disability or not.
Those of us with disabilities also have our own way of coping with them. For me, it’s humor. It’s the reason I had a bright pink cane for a time. If I was going to have to deal with using a cane because of the 12q, I was going to find the brightest prettiest cane I could find and rock the heck out of the 12q.
To help cope with my disability, I laugh at my unique perspective. I laugh at life itself. Like the night I mistook the pizza delivery car for a taxicab. (In my defense, they did both have lights on the roof.) Or the night my daughter called and I mistook the word sausage for prostitute. I still haven’t lived that one down.
There’s another way that I’ve learned to deal with my disability, and that is to get out in the world and deal with it. That means I travel, often by myself. If I come up against a roadblock, then I figure my way around it right then and there. As a result I’ve learned to use my adaptive equipment to help me ride escalators, and to use curb cuts on days when I’m having trouble judging the edges of things.
These days I impress myself with what I can do with technology. I’ve learned to use a Nook and close caption the television. I have an alarm on my tea mug to let me know when it’s full and have even
Seven years ago, when my youngest child was diagnosed with chromosome 12q duplication syndrome, I learned that I too had the syndrome. It’s a rare condition caused by the abnormal duplication of the long arm of chromosome 12, leaving three copies rather two. At that point the 12q was more of a footnote to my hectic life. Syndrome or not, life went on. There was work and the children and hundreds of other things to think about, none of which the 12q really affected.
The syndrome that hadn’t affected my life too much reared its ugly head two years ago while I was driving home one night. In an instant, a highway exit disappeared from view and came back, giving me an extreme “What the heck was that?” moment. Little did I know that this episode was about to usher me into the world of visual impairments. I now have forearm crutches to help me walk. My visual distance impairment changes are frequent, and I have slight hearing loss.
Because I’m an advocate for people with disabilities, some praise me as inspirational. But I
BY CARLA CHARTER
“If I come up against a roadblock, then I figure my way around it right then and there.”
“I was going to find the brightest prettiest cane I could find.”
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you. Ask me about my kids and you may not be able to stop me. Treat me as if the crutches, the visual impairment and the hearing loss don’t exist and we’ll be instant friends. And always, always please remember, I am you.
Carla Charter is a writer, special needs legislative advocate and mother to three remarkable children. She has duplication 12q syndrome and is, in her words, learning every day how to “rock her disability in the real world.”
applied for a close captioned phone – who knew they even existed! I thumb through catalogs and have even attended an abilities expo recently in search of more equipment to help me remain independent.
I am not my disability. I am more than my cane, my crutches, my visual impairment and my hearing loss. Before all of that I was just like you. I was active and I worked, took care of my kids, laughed, hung out with my friends. None of that has changed.For those who meet me: Get to know me as a person. Ask me about my latest novel and I’ll tell
For more on this topic, visit geneticalliance.inspire.com
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Living with the Uncertainty of NF
become a college graduate.
But in October 2013 all that changed. A week before her 30th birthday, I had to give Megan the news that she had aggressive breast cancer. We learned that people with NF have a four times greater risk of having breast cancer.
Megan has had a double mastectomy, reconstruction surgery, two rounds of chemo, and now doing radiation and a 3rd round of chemo. We have approached her breast cancer as we have approach her NF – by taking one day at a time – and living this way has truly helped her stay positive thru her treatments. Even with her NF, Megan has never asked, “Why me?” She handles all of this with amazing courage and grace. She is my hero.Five years ago I met a group of mothers whose young children were recently diagnosed with NF. I wanted them to meet Megan to see how bright their children’s futures can be; I wanted them to know it’s not all gloom and doom.
If we can keep the doctors at the microscopes so they can find a cure for this horrible disorder, maybe we can make patients’ quality of life better and not so scary and uncertain. Research money is what will allow that to happen.
When Megan was first diagnosed, a dear friend said how sorry she was, and that she just couldn’t find a silver lining in all of this. But my friend was wrong. Through this journey with Megan and NF, we may not have seen it right away, but it was there: All the amazing, caring and generous people we’ve met along the way are the silver lining.
Kate Duff lives in Massachusetts with her family. For the past three decades, through Neurofibromatosis Northeast, Duff has helped raise money for NF research.
When our adult daughter Megan was about three years old, I noticed several bumps on the side of her head, and some brown spots on her belly. After meeting with her pediatrician, Megan had surgery to remove the bumps.
The week after the surgery, her surgeon called to say that what he removed were tumors and that Megan had neurofibromatosis (NF), and that we would be hearing from her pediatrician, and he hung up the phone. This was in 1987. There was no quick or easy way to look up information on NF, and never mind trying to research – I had NO idea what the surgeon even said.
Our pediatrician told us what NF was and that Megan most likely had this disorder, but she had never had a patient with NF. She gave us a Neurofibromatosis Northeast pamphlet that detailed what seemed to be a lot of scary things about the disease. We left the office overwhelmed and just couldn’t believe that our perfect little girl had this horrible disorder. We agonized about Megan’s future.
The next day, I called the number on that flier. That was a lucky day for my family and me. The nonprofit organization Neurofibromatosis Northeast and its director, Karen Peluso, have saved my family andMegan many times over the last 28 years.
Although NF has brought us challenges, it has never been too serious or life threatening. Megan has had her share of surgeries to remove painful and disfiguring tumors, and she has dealt with learning disabilities that she has overcome to
BY KATE DUFF
For more on this topic, visit nfnetwork.inspire.com
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On Growing Up with Chronic Illness:
I truly felt detached from my body. It wasn’t mine. I didn’t know how to handle it. I despised it. It was the source of so much pain. And so, I wanted to leave it.
I never connected my inability to stick up for myself with being a child of chronic disease until the last couple of years. As I reflect back, the correlation is so clear. I never was taught to question what my doctors did to my body. I cannot recall being asked if it was “okay” to be examined or to be touched. If I was in a doctor’s office, it was just assumed and expected. To be clear: There was absolutely never anything inappropriate that happened to me in my doctors’ care. I think the only reason that the perceived lack of power on my side affected me is because I was a child, and I didn’t have the capability to differentiate the way I handled my body in the care of a doctor versus the hands of a teenage boy.
At the age of 24, I had once again lost control of my body. My Crohn’s was in a full-force attack and resulted in me having multiple surgeries. I’m now living with a permanent ileostomy bag. At first, I resisted it with an iron fist, viewing it as my opportunity to stick up for myself and say “no.” I tried every diet in the world, I tried every natural path – just to prove that that I could heal myself, that I had the power, that I was the one who could call the shots on my body. But, I eventually had to succumb.
I’ve made it my life’s mission to not allow this ileostomy bag to drag me down. Yes, if I had had it my way, I wouldn’t have had the surgery or the bag.
As a child who was diagnosed with Crohn’s disease at the age of nine, I learned to give my power over to my doctors and parents. I never questioned the constant prodding, the pain that I had to endure from different tests and exams, the dozen pills that I swallowed down each day, because after all, I was to trust doctors and adults. They knew what was best for me. They knew what was best for my body. And of course, this is true – but only to an extent. Please hear me out.
In no way am I undermining the miraculous work that medical professionals do each and every day. I am beyond grateful for the way that my disease was handled, I was given a fairly normal childhood because of the way my medical team was able to manage my disease. And on top of that, I have the most incredible parents who handled my disease beautifully; they allowed me to feel supported, loved and taken care of. Honestly, I just had to show up for doctor appointments, swallow pills, and be a kid. I left the details up to the adults.
But then I started growing up. High school, boys, and school dances became my new normal. I lost my power at the age of 17 when I was date raped. Although I attempted to say “no” and stick up for myself, I ultimately didn’t know how to confidently do this. I didn’t know how to command respect because I was so used to never being asked to say “yes.” Unfortunately, this situation snowballed into another date rape and ultimately a suicide attempt.
“I’ve never felt like I had ownership over my body”
BY DANA GATZIOLIS
“I’ve made it my life’s mission to not allow this ileostomy bag to drag me down.”
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medical community.
There needs to be some sort of initiative taken to teach children that they are involved in their care – even if it’s just a simple question before an intrusive exam. It seems simple, but I truly believe that this can help build up a sick child’s ability to stand up for him or herself as they grow into adulthood. I stand in solidarity with all children and adult children of chronic disease and ask for this idea to be examined. Please give us our power and dignity so that we may grow up to be confident adults and able to stand up for ourselves.
Dana Gatziolis is a health coach, country singer/songwriter, author, and ostomy advocate. She loves helping women (and men) to fall in love with their bodies and their lives, one step at a time. She’s got a knack for hitting fear out of the park and living life out loud. She blogs at danagatziolis.com and is also on Twitter.
But instead of putting this in the same category as the other times I lost my power, I’ve chosen to shift my perception. My power now resides in my ostomy bag. I am healthy, I can live fully, I’ve learned so much about who I am and what I want, I know what I deserve, and I’m truly committed to being the light for others.
Today, I can truthfully tell you that I don’t regret anything. I’m grateful for every obstacle and for every hurt because it has brought me to the woman that I am today. And I love her. But still, my story needs to be heard – and I beg for this conversation to be opened up in the pediatric
For more on this topic, visit ostomy.inspire.com
“I beg for this conversation to be opened up in the pediatric medical community.”
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“What Might They Be Interested in Learning from Me?”
health challenges.
It can be daunting, however, to do advocacy work and to reach out to the medical community, whether it be a hospital, a medical school, a local health fair, a private medical practice or your own doctor/health-care provider’s offices. In the last 15 years of working on various forms of medical advocacy, I’ve found through trial and error some useful steps in obtaining the best results in each area of the medical community and all health-related entities.
There are several suggestions you can make to a hospital representative regarding medical advocacy. You could ask for an awareness table at the hospital, to be manned by knowledgeable support staff, on your condition; suggest that you provide literature to various departments on the condition that pertains to their particular specialty; or inquire about the opportunity to tell your personal story and answering questions from individual departments/staffs at the hospital.
One way to improve your chances of gaining an opportunity for advocacy is to ask your own doctors to help, especially if they’re affiliated with a local medical school or have good contacts at the hospital and/or medical school you would like to advocate to. They may teach or present at affiliated hospitals and medical schools and/or know doctors who do or key administration representatives to talk to.
Being an advocate to the medical community is an important way to raise awareness of your condition.
Many people throughout the years have asked me why I became an advocate, and my answer is found in what was a perfect storm of several factors. One large one was losing my ability to work in the executive career that I had made major advancements in. This loss, coupled with having to navigate the social security disability system and the back-and-forth with my private disability insurance company, made my overall health (both physical and mental) much worse. It’s one thing to have to suffer with one’s health (or lack thereof) but to have to fight for benefits that you’ve earned and payments from a private insurance policy that you’ve paid decades for, while dealing with the many financial challenges that accompany the incredibly difficult decision to stop working make for a very lonely and aggravating time.
By going through rough times, I learned what works and what to avoid – and I made a promise to myself that I would help others through the process. I want to be a source of support and let patients know that they’re not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day
Tips on medical advocacy
BY JONATHAN RODIS
“It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day health challenges.”
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that they could utilize to help future patients with my condition?’
Armed with factual information and the power of your own story is key to improving not only the awareness of your condition in the medical community but hopefully the quality of care for all those with your condition who walk through their doors in the future.
Jonathan Rodis has Marfan syndrome. He is president of the Massachusetts Chapter of the Marfan Foundation, and chair of the Physician Awareness Committee for Marfan and Ehlers-Danlos syndromes.
It’s important to keep in mind, also, that your message is a powerful and important one when it comes from your own or a close loved one’s experience with the condition that you’re advocating for. Having a condition, knowing all the facets of its symptoms and the key factors that most doctors and medical students may not know should be an integral part of your message in advocating for your condition.
No matter what type of medical advocacy you want to start first, take time to consider what message best fits the individual or organization you’re interested in contacting. It’s always a good idea to step back and think, ‘What might they be interested in learning from me about my condition
For more on this topic, visit eds.inspire.com
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Surviving a Betrayal of the Heart
day, an angiogram found a tear in the innermost wall of my coronary artery called a spontaneous coronary artery dissection (SCAD). This tear causes blood to flow between the layers of the arterial wall, blocking blood flow and causing a heart attack. SCADs are rare, yet, nearly 80-90 percent of SCAD patients are women in their early 40s with no additional risk factors.
It’s not yet known what causes SCADs. So, I am left with a lot of unanswered questions, and I’ve had to slowly rebuild trust in my own body and abilities, knowing my condition is rare and poorly understood.
At the beginning, I was pretty wobbly. I was participating in my care and learning all I could about SCADs, but I was traumatized by the event and from carrying the weight of this new reality. I looked like I was doing well, but inside, I hadn’t reconciled with my new, fickle body.
Gradually, I started regaining trust in my body. With a little anxiety, and often with company, I resumed hiking, biking, warm-water swimming and skate skiing. I had an episode of ventricular tachycardia four months after my SCAD, so I was on a short leash for a long time. Yoga was an important part of my recovery because it allowed me to move and
This is a story about a betrayal of the heart — an actual heart. Girl has heart, girl treats heart well, heart gets torn up and girl figures out how to recover from this betrayal by her own body.
Last summer, I participated in my second sprint triathlon. The first part was a half-mile swim in a cold lake. I’d been swimming this distance for months and had done this same triathlon before. Yet, I couldn’t catch my breath, my chest hurt and swimming was appallingly hard for me. But I persevered and finished the biking and running events just fine.
Two weeks later, unnerved by my unsuccessful swim, I steeled myself for a similar swim across a lake in Idaho. Almost halfway through my swim, I started struggling to breathe and felt a band of pain and searing cold across my sternum. I felt weak and cold and couldn’t swim anymore. Fortunately, my husband was on a paddleboard close by. I called him over, climbed on the board and hung onto his ankles for dear life (vomiting occasionally) as he paddled us to shore.
In retrospect, I had many of the typical symptoms women experience when having heart attack, but it took a while before it dawned on us that I was suffering from one. I don’t fit the profile: I was 53, nearly vegetarian, slim, fit with a mild addiction to kale smoothies. However, I had just gone through menopause and was on a low dose of HRT.
Fortunately, the ER doctor in Idaho did an EKG and figured out I was having a heart attack. The next
BY DR. TINA PITTMAN WAGERS
“I am left with a lot of unanswered questions, and I’ve had to slowly rebuild trust in my own body and abilities, knowing my condition is rare and poorly understood.”
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I have joined the board of SCAD Alliance and am working on a survey for SCAD survivors to help us understand how we can best address the psychosocial needs of this population. As a psychologist, this aspect of SCAD survivors’ experience is particularly intriguing and important to me. I hope our work will help survivors, care providers and family members understand what resources and skills SCAD patients need to survive, and survive well with happiness, resilience and courage.
The knowledge that I had a heart attack is never far from my mind. I no longer operate with the same unshakable confidence — thinking if I treat my body and heart well it can endure any challenge. Now, I treat my heart well, but the thought that it could betray me again has settled into my bones. I’ve learned to carry this with me and I hope that this has propelled me forward much more than it has held me back.
Dr. Tina Pittman Wagers is a mom, wife, lifelong athlete and a clinical psychologist. She is on the faculty of CU Boulder’s Department of Psychology and Neuroscience. She is a board member the nonprofit organization SCAD Alliance and is conducting a detailed survey of SCAD survivors’ psychosocial experiences.
strengthen my body with exquisite moment-to-moment awareness of what my body was capable of doing.
One year later, I am doing about 90% of the physical activities I was able to do pre-SCAD. I’ve had incredible luck in this journey, and there’s much I’m grateful for: a steady, kind husband who has helped me navigate some tough procedures and doctor’s visits; sweet, caring children (our two sons are 20 and 17); amazing and generous friends and family; and a job I love that loves me back. I’m also thankful for access to scientific literature; good health insurance; connections in the medical community that led me to wonderful, collaborative doctors;
and the ability to be assertive and courageous when I ran up against a non-collaborative or rigid care provider.
For more on this topic, visit womenheart.inspire.com
“The knowledge that I had a heart attack is never far from my mind.”
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Laughing Through the Pain:
I was so confused and in so much pain that I was relatively curt with medical professionals. I also thought that if I even smiled, they would think I was faking my illness. But once my symptoms started to improve a bit and I understood more about what was happening, I tried being open and jovial with those who were treating me.
The result was great; it should not have come as a surprise that a doctor who likes his patient is more likely to pay attention to her. Regardless of how badly I feel or how much I think something devastating may be happening to my body, I now try my hardest to make whatever dumb jokes I can manage in the hospital or at the doctor’s office.
The staff members, many of whom somehow make it through day after day of maudlin events and miserable people, respond quite positively to my Tommy Boy quotes and ridiculous metaphors about how the exam room smells like a robot dog’s pee. (In fact, I would like to think I get better treatment because of David Spade.)
The need to laugh off my issues has become so innate that it is now my first response when I go into shock. My old roommate loves to tell the story of when I stepped onto our back porch and it looked like a sniper hit me: I was down in an instant. She ran out to see what was wrong and found me laughing hysterically, screaming, “I’m
When you fall down at least once a week, you learn to laugh it off. No matter how much it hurts, you laugh because you know it makes other people more comfortable with what’s going on. If they believe you’re all right, your story is a comedy rather than a tragedy. I’m quite sure that this lesson I learned as a child (and have called on hundreds of times since) had a big part in my decision to become a comedy writer and performer, a career I began a decade before I was finally diagnosed with Ehlers-Danlos Syndrome.
Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show… My joints hyperextend, which is great for sex but terrible for JV soccer… I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.” Once engaged, people are much more likely to find some aspect of my condition that interests them and ask about that. This type of light interaction is far more comfortable than feeling like I’m teaching an NIH seminar on some disease nobody cares about.
In my experience, the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses. Just after my diagnosis,
A comedy writer’s experience with chronic illness
BY PAULA DIXON
“In my experience the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses.”
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I do not know where my life would be without my love of comedy, nor how I would have made it through the ups and downs of Ehlers-Danlos Syndrome. When it comes to relating to people, passing time in the hospital, or just convincing ourselves that there’s a lighter side to almost every situation, the most important part of the human body is the funny bone.
Paula Dixon is a comedy writer and photographer based in Los Angeles. She is a graduate of the USC School of Cinematic Arts and the Spéos Institute of Photography in Paris. Follow her on Instagram.
fine! Everything’s fine!” When I saw her worried, maternal expression, it made me even more afraid; I knew I had to alleviate her concern for both of our sakes, so I kept up my laughing and made jokes even as the unbelievable pain set in. As it turns out, I had ruptured my Achilles tendon and torn my calf muscle so badly that the orthopedic surgeon said it looked “like pulled pork; like a zipper went down the whole thing from top to bottom.” Looking back, I laughed and joked to make my roommate think everything was fine – the way you would treat a toddler who fell down and looks to you to gauge the severity of his injuries – but really I was the toddler, and making myself laugh got me through it.
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Take it from Me: they are “less of a man,” “not capable of being a good mother,” or other such nonsense. Psychiatric medications are often first prescribed to people in their early 20s who are not used to taking medication. Most 20-somethings are still in the “I’m invincible” phase.
I believe this can be remedied with education.
I’ve advocated for medical practices to offer psychiatric medication classes. These classes would cover the purposes of different types of medications, the appropriate expectations for patient’s compliance, and the patient’s responsibility in using the medication to help treat their disease. This information would be more comprehensive than a quick chat with a pharmacist and be tailored for psychiatric patients.
Medications, as all doctors know, don’t cure everything. Therapy, support groups, and even experience are part of the path to long-term wellness. If a patient mistakenly thinks that medication will solve all of their problems, they will often stop taking them when this doesn’t happen.
When I left the psychiatric hospital with my medications, I mistakenly believed all I had to do was be “med-compliant” and I would lead a productive and relatively normal life. Over the next
Whenever I give a speech to psychiatric practitioners, I start by giving the group index cards and pens and asking them to write down their most important goal for their patients.
Answers like “be med-compliant,” “miss fewer appointments,” and “follow my instructions” are always the most popular. Patients’ answers are much different. They write, “live well,” “go to Hawaii,” or “get back to work.” This exercise serves as a reminder to physicians that taking medication is not a final goal, but a step toward the ultimate goal of living well.
It’s important to realize that patients aren’t failing to take their medication as prescribed because they are incompetent, lazy, or intentionally self-sabotag-ing. Patients often skip doses or skew directions because they are scared of something, often due to a misunderstanding.
They may misunderstand the prescription instructions or the way the drugs work and this misinformation quickly becomes fact in a patient’s mind. They may already be confused by their diagnosis and lack knowledge about their condition. Once I understood how difficult it was to find the correct combination of medications, I felt much more hopeful.
More often than not, patients suffer from side effects or even a perceived moral failure by taking psychiatric medications. I’m surprised that many clinicians aren’t aware of the stigma patients feel about taking medication. They believe it means
To improve compliance with psychiatric meds, we must educate patients
BY GABE HOWARD
When I left the psychiatric hospital with my medications, I mistakenly believed all I had to do was be ‘med-compliant’ and I would lead a productive and relatively normal life.”
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against it. Managing expectations and fostering an understanding of the process improves the patient experience and, therefore, compliance.
More than anything, we want our providers to remember that mental illness can be pure hell. We want to know they are dedicated to helping us lead great lives and that they are taking our issues and concerns seriously. Living with mental illness means a lot of people in our lives don’t take us seriously. We need to trust our clinicians, and for them to trust — and educate — us.
Gabe Howard is an award-winning mental health writer, speaker, and advocate who lives with bipolar and anxiety disorders. Interact with him on Facebook, Twitter, or his website.
year, every side effect, every med change, and every setback was devastating. I didn’t understand why I wasn’t getting better. I was doing everything I could to be well. It was a lonely, isolating, horrible feeling. It made me think I was the problem.
Once I understood how difficult it was to find the correct combination of medications, I felt much more hopeful. When a person feels like they have input into their recovery, they will become motivated to work with the process instead of
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“I was doing everything I could to be well.”
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How a Kidney Cancer Survivor Became a Partner in His Care
His daily schedule was impressive. The doctor would arrive each morning at 6 a.m. to review the treatment notes of the two or three patients receiving IL-2, pay each of us a visit and then would be off to see patients in the clinic or to perform surgeries. He would usually stop by during the day and he would always come by in the afternoon or evening before going home. That visit would often be after 6 or 7 p.m.
In addition to those visits, he had to be called by the nurse prior to giving an infusion to a patient. Since the patient could receive an infusion as often as every eight hours if everything was okay, this meant a call to his home in the night; sometimes he would receive several calls if patients were on different schedules.
In the ensuing years since those treatments, I’ve come to realize that the vast majority of doctors, nurses and other healthcare professionals have a very similar commitment and passion for their work. It is therefore only reasonable that I should honor that commitment and passion when I’m seeing them for an appointment.
I try to be on time and to be prepared to get the most out of our meeting. I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.
My life changed forever on a cold rainy November afternoon in 1997 as I sat in a crowded emergency room. A surgical urologist knelt beside my chair and uttered five words, “You have cancer; it’s bad.”
A week later, the day after Thanksgiving, a huge tumor that had completely enveloped my right kidney was removed.
Prior to that diagnosis I had never heard of kidney cancer and had little experience with the medical community. I had not been to a doctor in years and viewed that profession as one filled with persons who had a good education, commanded a lot of respect, had a luxurious lifestyle, and enjoyed a life of relative ease. As it turned out, I was not only ignorant about kidney cancer, I had a lot of miscon-ceptions about doctors and the entire medical profession.
In 2000, I was referred to a specialist in a medical center some 90 miles from my home. This oncolo-gist was knowledgeable about the only treatment that had any degree of success in kidney cancer, a very rigorous infusion therapy with many side effects that required hospitalization.
A year later, cancer was found in lymph nodes in my abdomen, and I entered the hospital to begin treatments with interleukin-2 (IL-2). Although I had been impressed by the patience and skill of this doctor, it was during the IL-2 treatments that I began to really see his commitment and dedication to his patients.
BY MICHAEL B. LAWING
“I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.”
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it conveyed to the medical team that I was serious about the care I was receiving.
That process has allowed me to learn a lot about my condition, to be a participant in deciding my course of treatment, and to develop a great relationship with my healthcare providers.
Michael B. Lawing is a director of the Kidney Cancer Association and is involved in many cancer advocacy activities.
I prepare a list that details any information I need to tell my care provider as well as questions that I need to ask. It includes the medications I’m on, as well as prescriptions that I need to have refilled. I take notes, even to the point of recording them so that I can review them later. If there are any words or phrases that I may have difficulty in understand-ing or in spelling, I ask for additional explanations as necessary.
If I have diagnostic imaging that is being
reviewed, I tactfully request not only a printed copy of the imaging results but I also ask to look at the images themselves in order to gain a better understanding of the areas we are discussing.
The first couple of times I tried this more interactive approach, it was awkward and slightly difficult, but
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“That process has allowed me to learn a lot about my condition.”
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The Importance of Providing Patient Support in the Face of a Life-Threatening Illness
In the coming days, I was moved to the cardiac unit (the youngest on the floor at just 29 years old) and due to the persistence of one doctor who is now my hematologist, I was diagnosed with antiphospho-lipid antibody syndrome (APS). I soon learned that APS is an autoimmune condition in which the body mistakenly produces antibodies against itself that contribute to abnormal blood clotting. APS, combined with my use of estrogen-based oral contraceptives, was to blame for my blood clots.
The coming weeks and months of my recovery were the most difficult I’ve ever faced in my life. I could no longer do the things I loved to do, like run, or the things I had to do, like work, and I needed to use an oxygen tank and wheelchair. My strength was depleted, my leg and lungs hurt, and I was grappling with a diagnosis of a lifelong disorder that requires continuous care and medication. I was consumed with unwavering anxiety and depression.
The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life. I felt betrayed by my body, which I had taken great strides to take care of with healthy eating and exercise. I felt completely isolated by what was happening to me, and doctor support became crucial during the extensive recovery period.
The hematologist who assumed my care was ever-patient and supportive of what I was going through. He answered my questions as many times
As a long-distance runner, I was accustomed to pain of some sort, primarily in my knee due to a lingering injury that often caused serious pain. So, when I wrapped up a run one Saturday with excruciating left knee pain, I really didn’t think anything of it. But the pain persisted throughout the weekend and was soon accompanied by a stabbing pain in my left side and shortness of breath.
I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician.
At the urging of my primary care physician, I went to the emergency room and was admitted to the hospital two days later. I had a blood clot in my leg, known as deep vein thrombosis (DVT), and a blood clot in my lung, known as pulmonary embolism (PE). Having never been hospitalized in my life, I was scared, weak, exhausted and in more pain than I had ever experienced. I was put on IV blood thinners and kept in the intensive care unit for several days as doctors monitored my volatile condition due to the blood clot passing dangerously through my heart. I wondered what was happening and whether I would survive.
BY SARA WYEN
“I felt betrayed by my body, which I had taken great strides to take care of with healthy eating and exercise.”
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situation. I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician.
In seeing how others who survived a blood clot were also struggling, I became committed to helping people through
the tough parts that I had already gotten through. My passion for making a difference in the lives of others as my doctor had done for me became the driving force that helped me get through every single one of my unimaginable days of pain, fear and anxiety.
I encourage anyone who is recovering from a blood clot to seek out a doctor who supports you in your care, answers your questions, validates and addresses your concerns and helps you make connections to foster healing in your own life.
Sara Wyen is a founder and writer at BloodClotRecovery.net, a blog dedicated to helping patients through the recovery process from deep vein thrombosis (DVT) and pulmonary embolism (PE). She is also the manager of communications and health marketing at the National Blood Clot Alliance, a voluntary advocacy health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots.
as I needed, and assured me that while I was extremely ill, we would get through it together. He listened to me and recognized early on in my recovery that I wasn’t emotionally processing what had happened to me, therefore becoming depressed and anxious. He supplied me with resources and, by listening, also validated my pain and fear at facing a lifelong and potentially life-threatening illness that I had known nothing about.
Throughout my recovery, I began to see that patient support for survivors of DVT and PE was lacking, and finding a doctor who took an active role in my care was crucial to moving forward from my experience. After my doctor assured me I wasn’t alone, I reached reach out to online support groups and patient advocacy websites to further relate to other individuals who had been through a similar
For more on this topic, visit stoptheclot.inspire.com
“The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life.”
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