Experts by experience 2014: A compilation of patients’ stories

together we’re better
SM
Experts by
Experience
A compilation of patients’ stories
2014
A special report by Inspire, developed in cooperation
with the Stanford University School of Medicine

Introduction
Brian Loew
Foreword
Leana Wen, MD
The road to diagnosis: How to be insistent,
persistent and consistent
Joan Jahnke
The anxious warrior: Life as a cancer survivor
Dan Adams
When you say nothing at all: Living with an
invisible illness
Dawn Nellor
“Live Because:” Living a fuller life with
chronic illness
Michael Bihovsky
A moose no longer: How I faced down my fears of
heart disease
Ian Welch
Speaking up about being a cancer survivor
Aleka Leighton
Fibromyalgia – living with a controversial
chronic disease
Marijke Vroomen Durning
Asking the hardest questions: Talking with
doctors while terminally ill
Jessica Rice
After the cancer is gone, the real work starts
Britta Aragon
The day my doctor thanked me
Shani Weber
Hope and faith are powerful medicine
Buddy Ruck
My two-decade battle with psoriasis
Alisha Bridges
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Table of
Contents

3Table of Contentswww.Inspire.com
Experts by
Experience 2014
Introduction: Brian Loew, Inspire
Welcome to Experts by Experience 2014, our second
annual installment of columns written by patients
for Stanford University School of Medicine’s Scope
medical blog.
We at Inspire are again grateful to Scope editor
Michelle Brandt, the associate director of digital
communications and media relations at Stanford
University School of Medicine, and to Stanford
physician and Medicine X conference organizer
Larry Chu, MD. Thanks also to Leana Wen, MD, for
writing for the foreword to this report.
Lastly, we thank those who contributed their stories
to the ongoing series, who know that better patient/
physician communication will lead to better care for
patients everywhere. As rare disease patient advo-
cate Shani Weber noted in her column, “It’s important
to know that building a relationship of mutual trust
and respect can help both parties: Patients get the
care they need, and doctors can become more edu-
cated.”
Together, we’re better.
Brian Loew
CEO
Inspire

What Do People Want From Their Health Care?
Foreword: Leana S. Wen, MD
About a year ago I published a book on patient advocacy, and went across the
U.S. on a promotional tour of bookstores, libraries, nursing homes, universities,
and community centers. It was, in the parlance, a “speaking tour,” but for me it
turned into a “listening tour.”
Over 2,000 people—patients and caregivers alike—shared with me their
frustrations with doctors, insurers, hospitals, and the healthcaresystem. They
are similar frustrations to those shared in some of the columns in this report—
which makes sense, because all of us, at the end of the day, are patients and
people.
Among those themes:
• People don’t want more care—they want right care. They want to
know they are getting the right care, without personal incentives or
commercial interests getting in the way.
• People don’t expect perfection, but they demand transparency. They
know that doctors don’t know everything, but they want them to share
what they do know.
• People aren’t lazy when it comes to their health, and don’t always
want the quick fix. Most people don’t want to go to their doctor at
all, and prefer to find ways on their own to improve their lifestyle and
prevent disease.
As the great humanist and cardiologist Dr. Bernard Lown said, we need to “do
as much as possible for the patient, as little as possible to the patient.” Medical
students need to learn shared decision-making and integrated care.
Patients—people—should be part of every healthcare debate. We must restore
medicine to being a caring partnership, with shared decision making that pri-
oritizes basic human dignity and respect.
Leana S. Wen, MD, is an attending physician and Director of Patient-Centered
Care Research in the Department of Emergency Medicine at George Wash-
ington University. She is the author of the critically-acclaimed book, When
Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests, and
founding director of Who’s My Doctor, a new campaign for transparency medi-
cine. Visit her blog and follow her on Twitter at @DrLeanaWen.

Joan Jahnke
After 2 ½ years of seeking a definitive diagnosis for my heart disorder, my phy-
sician of 14 years told me, “You have been insistent, persistent and consistent
each time you presented.” She smiled at me as she said this, and I accepted
this compliment as a job well done.
I had been diagnosed with cardiac endothelium
dysfunction. I considered the diagnosis a tri-
umph of some sort: Standard tests don’t always
identify the disease, and I had gone on quite the
journey to identify the source of my problems.
From the beginning, I had stayed focused on my heart symptoms. When var-
ious specialists insisted on blaming other organs (gall bladder, uterus, lungs)
for my chest pain, I was insistent that they were off target. As a cardiac nurse, I
knew that the mounting conflicting test results were confusing, but I felt con-
fident my heart was the issue. After all, I knew myself far better than anyone
else could.
Within weeks of my symptom onset, I read an interview with Dr. George Sop-
ko, a cardiologist at the National Institutes of Health, who said, “Women, pay
attention to your heart symptoms.” And so, I did that. I began a very succinct
journal documenting the timing, duration and quality of chest pain I was expe-
riencing, and I also included what I did to relieve the symptoms. It presented a
cause-and-effect pattern with details that supplemented my memory.
I persisted in my search for a definitive diagnosis for my symptoms. My sourc-
es were not anecdotal stories from Internet blogs, but instead were scientific
papers funded by medical universities and research institutions. I copied med-
ical articles, whose content and format would be most familiar to physicians. I
sought out the opinions of medical friends and colleagues, and I approached
my research from the perspective of a student – not that of an emotionally
distraught woman whose quality of life was rapidly failing.
From the beginning, I had
stayed focused on my heart
symptoms.
The road to diagnosis: How to be
insistent, persistent and consistent

I remained consistent in my approach. Mindful of how time-consuming diffi-
cult diagnoses can be, I came prepared for appointments. I brought with me
my ever-present journal, previously prepared questions and medical articles.
Many times, my husband would serve as my note-taker, which allowed me to
listen closely and concentrate on getting my questions and comments ad-
dressed. I offered options for my physicians to consider. I was wrong many
times, but never was I rebuffed.
My behaviors culminated in a referral to the
Emory Heart Center in Atlanta. By then I was
very short of breath, and pain dominated my
life. I forwarded my precious journal to the Em-
ory cardiologists, Dr. Jerre Lutz and Dr. Habib
Samady, and asked them to read it prior to my
appointment. Dr. Lutz knew by page four what
was wrong! And he immediately initiated a medical plan of action, in conjunc-
tion with Dr. Samady.
My advice to anyone traveling on the difficult road to a diagnosis is to not be-
come the difficult patient – that is, the patient who doesn’t keep track of tests
or medication trials as the medical record grows in size, who doesn’t return for
appointments, or who disrupts an office practice and makes accusations that
no one is listening to his or her complaints. A squeaky wheel doesn’t always
get the first or best attention.
Instead, develop a set of behaviors that make you a participant in your health-
care – not merely its recipient. And be insistent, persistent and consistent in
your communication and relationship with your physicians.
Joan Jahnke, a retired R.N. with experience in cardiac nursing, lives in South
Carolina. She has written about her heart experiences and been active on the
Internet since 2008. In 2012, she appeared on a PBS show to discuss how her
heart disorder has changed her life, and the difficulties she had in obtaining a
diagnosis.
A squeaky wheel doesn’t
always get the first or best
attention.

Dan Adams
This past November I had my semi-annual cystoscopy. My visit was an early
Christmas present, as I wound up receiving an “all clear” from my urologist.
This coming May, if I get another “all clear,” it will mark five years of can-
cer-free living.
I had a resection to remove a bladder tumor in April 2008. I received an incon-
clusive pathology report following that procedure and a lot of hesitation from
my first urologist. That’s when I sought a second opinion from a urologist at a
major university hospital. Another resection and a couple of rounds of immu-
notherapy, and my bladder cancer was gone.
My follow-up cystoscopies were initially every three months, and now I’m com-
fortable with a six-month schedule. If something
is going on in there, I want to catch it early. I’m
not ready to move to an annual checkup. I don’t
know if I will ever be ready.
It’s been a bumpy road; a few “red spots” in the
bladder that required biopsies and a perforated
bladder (those damn catheters) elevated my anxiety above and beyond what
might be the norm following a cancer diagnosis. Having a cancer with a high
reoccurrence rate also contributes to my feelings of anxiousness.
During the first couple of years in this war with bladder cancer, anxiety con-
sumed my everyday living. Cancer was always on my mind, but I was unaware
that anxiety was running my life. It took a long time, but eventually I learned
to recognize changes due to anxiety, things that aren’t really “me.” Inatten-
tion to details, aimlessly daydreaming and becoming much more emotional
were some of the telltale signs. I realized things weren’t right and I sought the
professional help I needed. Thankfully, this help and the encouragement and
support of a close family brought me through a very trying period.
While my anxiety is more or less under control, I’m still very aware that it’s
there – and I’ve come to realize that knowing you have anxiety issues is es-
I’m not ready to move to
an annual checkup. I don’t
know if I will ever be ready.
The anxious warrior: Life as a cancer
survivor

sential to dealing with them. I know my anxiety level increases as I approach
my next cystoscopy, and so I now slow
down in the weeks leading up to the pro-
cedure and defer major decisions to a less
anxious time.
I’m very aware now of anxiety and how it
has affected my life beyond cancer. In this
nearly five-year battle, anxiety has been
the one medical issue, or side effect, that
no one brought up; no one mentioned it
as an issue to be aware of or offered treatment. I wish someone, in the begin-
ning, had told me that cancer is a game changer, that my life will never be the
same. I wish someone had explained that I need to be aware of how powerful
anxiety can be, how it can affect your life, your relationships, your work.
I’ve been a bladder cancer warrior for almost
five years, but it’s been only the last few years
that I’ve come to realize that anxiety – not just
the disease – is something I need to conquer.
Dan Adams lives along the Southern New Jersey Shore where he and his
wife of 35 years raised three children and recently became grandparents for
the first time. Dan is committed to raising awareness of bladder cancer and
supporting those who are newly diagnosed through the Inspire/BCAN Support
Community.
I wish someone had explained
that I need to be aware of how
powerful anxiety can be, how it
can affect your life, your rela-
tionships, your work.
I’ve been a bladder cancer
warrior for almost five years,
but it’s been only the last few
years that I’ve come to real-
ize that anxiety – not just the
disease – is something I need
to conquer.

Dawn Nellor
Imagine you’re a busy specialist, preparing to meet a new patient in your
office…
You note that your patient only slightly smiles and seems a bit distant. Many
of your patients come in with three backpacks full of medical records, yet she
has nothing. If this patient is so ill, where are all her labs and tests? You note
that she’s watching your every move, and you can’t help notice that she’s
mainly watching your face. Where is her
laundry list of symptoms and complaints,
you wonder. You ask her what’s going on
and what brings her in today. In a quiet
voice she answers, “I’ve had pulmonary
sarcoidosis for four years, and I’ve been
having facial and hand pain for two years,
and no one knows what’s wrong.” You’re puzzled by her, wondering why she’s
monotone and aloof. Do you ask yourself, “Is that it, just one sentence from a
chronically ill patient?” And do you feel concerned – or lucky?
As a person with a so-called invisible illness, my behavior at my last appoint-
ment with a specialist mimicked that of the patient in the scenario above. Why
did I act this way? Because I was afraid to be there, and because I had low
expectations for the visit. The behavior of past appointments with family prac-
tice physicians and specialists have numbed me to their raised eyebrows and
the “look-away” that represents disbelief. I already know when the arms are
crossed and the chair rolls back that the doctor’s next questions will be, “Are
you sure it’s not stress? Do you exercise? Are you on antidepressants? Why
don’t you see your psychiatrist, or try a different medication?”
There’s a major communication gap between chronically ill patients and some
physicians. I don’t criticize every doctor by any means. But I feel that not
enough physicians understand that both doctors and patients want and de-
serve respect, and to be heard. Patients don’t want to feel dismissed.
There’s a major communication
gap between chronically ill
patients and some physicians.
When you say nothing at all: Living with
an invisible illness

Based on my experience of not always hav-
ing been heard, I’ve made changes in my
life to empower myself. I live in a small com-
munity, but through online support groups I
constantly talk with others affected by rare
diseases to raise awareness on what life
is like living with one or having a love one
affected by one. I attend cognitive therapy
weekly to take more control over various areas of my life and to be reminded
that I still need to ask for help. I’ll soon be going to a pain management clinic
that has an intense program in which a psychologist helps with coping skills
related to the pain and a physical therapist works with you. I educate myself
more through reputable medical sites, and I keep my primary care physician
educated on clinical news.
As for changes physicians might consider, one way
to improve physician/patient communication is for
doctors to read and understand first-hand patient
accounts – and to understand that if a patient isn’t
saying much during an appointment, there’s prob-
ably a good reason. And I encourage physicians to
be more aware of their body language when talking
with patients, particularly those struggling to get the
right diagnosis. If we sense that you’re frustrated even before you say hello,
we’ll likely close up and just go through the motions during our appointment
- like the patient did above. And how unfortunate would it be if you were the
one doctor who could actually help that patient?
Dawn M. Nellor, of Audubon, Iowa, advocates for rare diseases and educa-
tion on the stigma of invisible illnesses. She’s currently learning lobbying at
the legislative level for sarcoidosis research and treatment. Her greatest joys
in life are music and her pets, which include one Maltese dog and four cats.
I encourage physicians
to be more aware of their
body language when
talking with patients
Based on my experience of not
always having been heard, I’ve
made changes in my life to
empower myself.

Michael Bihovsky
I have been experiencing severe physical symptoms for the past decade,
since I was 16. These symptoms were only recently diagnosed as Ehlers-Dan-
los Syndrome, bordering the hypermobility and classical types. Over the years,
my symptoms have come to match a relatively “textbook” understanding of
connective tissue disorders.
In earlier stages, however, my chron-
ic global pain was largely dismissed
and my extreme hypermobility was
deemed an irrelevance. I arrived at
my EDS diagnosis through my own
research, and then had my diagno-
sis confirmed by every subsequent
medical expert.
Since then, I have worked to educate physicians and patients alike about
the surprising prevalence and effects of this specific disorder, and about the
broader psychological implications of any chronic disease.
I have done this largely through the use of musical theater, where I have
written and produced musical plays and one short film featuring the stories
of people with various “invisible” conditions. My most successful piece, “One
Grain More”, is a musical parody that uses humor as a means to give sufferers
of food allergies a chance to laugh at their own painful restrictions.
Over the years I have developed and employed a variety of such coping
mechanisms, mostly focusing around a philosophy I call, “Live Because.”
“Live Because” is in contrast to what I’ve termed “Live Despite,” which is the
idea that people can live rich, full lives in spite of their physical or emotional
barriers. “Live Because” takes this a step further by suggesting that in many
cases, patients can live a more fulfilling life with their illness than they could
ever have done without it.
I have worked to educate physicians
and patients alike about the surpris-
ing prevalence and effects of this
specific disorder
“Live Because:” Living a fuller life with
chronic illness

Ehlers-Danlos syndrome has transformed me from a frequently petty and
self-absorbed person into the person I am today (still somewhat self-absorbed,
but a lot less petty, and with a clearly defined purpose of alleviating whatever
suffering I can). I am better because of my illness, and not just in spite of it.
But this process was, and still is, a journey. Chron-
ic illness is nearly always accompanied by de-
pression, and the need to constantly remain one
step ahead of my illness has left me fearful and
exhausted. I could never go through this alone.
Every person who supported me, and every doc-
tor who believed me and encouraged my quest
for answers helped me immeasurably along the way. Perhaps my greatest
gratitude is to the remarkable organization Friends In Deed, a pragmatic crisis
center in New York City for people with serious illnesses.
A part of me will always be angry; such is the pro-
cess of mourning the pieces of oneself that are
lost to chronic disease. I have learned to accept
the duality of being bitter and at peace; ignorant
and enlightened. The best physicians have been
the ones who guided me along this mourning
process, while still laying a foundation of hope for
the possibility that I can still realize my personal
dreams and ambitions, even if not in the exact ways I had expected.
Michael Bihovsky is a musical theater composer and performer, and an “in-
visible illness” advocate. He is best known for his viral YouTube video
“One Grain More,” a musical parody of Les Miserables about the plight of the
food allergy community. Michael has also written an original musical, “Fresh!,”
which tells the semi-autobiographical story of a group of college freshmen
overcoming physical and emotional adversity amidst the craziness of college,
and he is currently writing a book titled “Live Because: The Philosophy of the
Broken, and the Journey Toward Wholeness.”
I am better because of my
illness, and not just in spite
of it.
I have learned to accept
the duality of being bitter
and at peace; ignorant and
enlightened.

Ian Welch
A moose will hide behind a tree when it senses danger, no matter how small
the tree is. The moose figures if it can’t see you, you can’t see it.
I hid behind a virtual tree, in denial, when I began to feel symptoms of heart
disease. Perhaps I was also naive, thinking I was okay because there was no
history of heart disease in my family.
I hid behind the knowledge that three of
my grandparents lived into their 90s, eating
pretty much anything they wanted. I was also
comforted by recalling memories of the ath-
lete I was. I ran a marathon at 13, and I was a
competitive swimmer. I didn’t think it was pos-
sible for me to become part of the 2/3 of Americans with a chronic disease.
However, deep down I knew something was wrong. I could jog but had to
walk the first mile. I had pains in my jaw and neck. My blood pressure was high
and my weight gain was unprecedented. Classic angina. My family doctor felt
medication was the best solution.
I’ve always been leery of medication, and the recommendation from the
doctor seemed cold and generic. There was no explanation of why this was
happening to me. Nor an explanation of inflammation or even a few moments
spent explaining the surgery that was knocking on my door.
There was also no diagnosis of blocked arteries - yet. And so I began to blame
my angina symptoms on the medication, and I eventually stopped taking the
meds. I started lying to my wife about my blood pressure readings at night
because I didn’t want her to worry. But finally, I couldn’t continue hiding from
the truth. I went to a cardiologist and he found I had four major blockages in
my heart. Instantly, the twig I was hiding behind disappeared. In retrospect,
not taking the medication might have saved my life. Rather than masking the
symptoms and creating an artificial well being, I had to face the symptoms
head on.
Deep down I knew something
was wrong.
A moose no longer: How I faced down
my fears of heart disease

And so on March 23, 2011, I checked into the hospital for an operation during
which for three hours my heart stopped beating on its own as a surgeon graft-
ed various veins from my legs to my heart. I stepped out from behind the tree
and faced my fears that day by having a quadruple bypass at the age of 40. I
was now a part of a new club – the “zipper club” – with millions of other mem-
bers who have also undergone open-heart surgery.
Learning of my disease was the single most valuable
experience that I’ve ever had. I’m a different person
than I was prior to the diagnosis, and I understand
now and relish the fight to improve my situation.
I used the experience as an opportunity to transform
my life. I quickly realized that my refrigerator had tried to kill me. (I had spent
years avoiding lightning and buses when the biggest threat to my health was
twenty feet from my sofa.) I completely dismantled my entire nutritional pyra-
mid and I flipped it upside down. Plants were now my foundation, and every-
thing else was replaced. By simply having a plan, I was now in control of my
disease.
Now, my dilemma is riding the fence between the medical and wellness indus-
tries. I have shed over 40 pounds from my top weight of 235. I eat less than 10
percent fat and thrive on a diet based solely on plant-based nutrition. I exer-
cise 90 minutes a day, with Bikram Yoga during the week and long runs on the
weekends. However, my last cardiologist (I have yet to find a primary doctor)
insisted I attack my disease with heavy doses of statins, fenofibrates and nia-
cin, despite recent evidence of the ineffectiveness of that regime. I’m unable
to find a doctor yet willing to meet me halfway, to acknowledge the ability of
the body to reverse heart disease through nutrition.
So, I’ve stopped straddling the fence. I move forward as the CEO of my own
plan. I’ve moved away from the tree, into the open, and I accept the conse-
quences of the decisions that I’ve made.
Ian Welch, lives in Palm Beach Gardens, Fla. with his wife. Ian’s day job
involves managing municipal bond portfolios. He is an avid long distance
runner & Bikram Yoga practitioner. He blogs at www.WholeFed.org, and he re-
cently published the book “Instead of Flowers: Harness the Power of a Chron-
ic Disease.”
By simply having a plan,
I was now in control of
my disease.

Aleka Leighton
I was reading a post recently from a newly diagnosed thyroid cancer patient
in my online support group. She wrote that she was getting nightmares from
reading the stories she saw on the site and, also, that she didn’t want to live
with what thyroid cancer means to her now. At that moment, I considered how
my own life had changed. One year ago, I was that woman. I was afraid to
know, afraid to be informed, afraid to
wait, afraid of the doctors, the hospi-
tal, the labs, afraid about whether my
life was going to change or not. Was
I going to be the same after the can-
cer?
My story dates back to November
2011, when I went to an otolaryngologist because I had an ear infection that
my primary doctor tried to treat but that was still causing me discomfort. The
doctor thought that it was earwax, so he removed it. But when I was ready to
leave, he suggested that he check my nose, mouth and neck ”since you’re
already here.” He started to touch my neck and then told the assistant that he
felt a nodule in your thyroid. “But don’t worry about it,” he told me. “A lot of
women have it and it’s very common. You just need to have a neck ultrasound
and I’ll see you in three weeks.”
And thus began the rollercoaster ride that included Internet searches at home,
consultations with doctors, more research, and some tears.
In January 2012 I met with an endocrinologist, and here is where my story
completely changed for the better. The endocrinologist performed the FNA
(fine needle aspiration) biopsy and explained to me everything I needed to
know – the potential problems, the potential treatments. No more Google
searches. No more questions. I was with the right doctor, finally. Just several
days after meeting him, he told me I had papillary thyroid cancer. And at that
moment, I thought to myself, “You can start crying, or start fighting.”
And thus began the rollercoaster
ride that included Internet searches
at home, consultations with doctors,
more research, and some tears.
Speaking up about being a cancer
survivor

I chose to fight.
After the RAI and subsequent surgery, you feel tired. You gain weight. You’re
moody. Your skin is dry. You’re always worrying about remembering to take a
pill that you’ll need to take every morning for the rest of your life. It felt like be-
ing 13 again – but in the body of a 44-year-old woman. I also at times felt like I
knew too much, and thinking about life without
a thyroid was scary.
But it hasn’t been all bad. My thyroid cancer
was found early (something I thank God for
every day), and I’ve gotten much information
and support from the organization ThyCa,
which my endocrinologist told me about after
the surgery. I was forced to find out what life is
like without a thyroid (including the changes to
your hormones and your mood), but I’ve benefited from the tips and wisdom
of those people online who have been dealing with thyroid cancer issues for
much longer. (Doctors, I encourage you to support patient support groups
like the Inspire/ThyCa Support Community and to embrace the wisdom of
informed patients. We can help you learn and be more prepared as you treat
patients.)
More than one year after my surgery, I’m among the many thyroid cancer
survivors out there. I’m now active in sharing my story and telling my friends
and family to “check your neck,” and I thrive on the support I get from various
online communities. I’m more educated now, and I always speak up.
Aleka Leighton, a native of Chile, is a journalist who lives with her husband in
Miami, FL. She works to create awareness in the Hispanic community about
thyroid cancer.
I’ve benefited from the tips
and wisdom of those people
online who have been dealing
with thyroid cancer issues
for much longer.

Marijke Vroomen Durning
I can’t imagine anyone relishing the idea of being tired, in pain, or suffering
from “brain fog” for one day, let alone for months or years. If you have fibromy-
algia, this is what you experience on a regular basis. Yet there are people who
believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the
purpose of appeasing patients, giving their complaints a name.
Incidences of muscle pains characteristic of
modern-day fibromyalgia have been docu-
mented for centuries, but only in the 1970s did
the disease begin receiving serious attention
as physicians began to better identify trigger
points, inflammation, and fibromyalgia-associ-
ated issues such as sleep disorders and irrita-
ble bowel. And only in 1987 did the American Medical Association recognize
fibromyalgia as “an emerging condition.” But saying it’s a disease and convinc-
ing non-believers are two different things.
I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to di-
agnose, it’s difficult to explain. Although I was only diagnosed a few years ago,
I can trace the symptoms to my teens. I often experienced unexplained bouts
of exhaustion and pain. I never slept well. I had other fibromyalgia-related
physical issues, but no one could figure out what was wrong. After a while, I
began to believe that it was all in my head. I knew I felt the pain, but there was
no explanation. I knew I was exhausted, but everyone is tired – why would I
be any different? The other symptoms? I was overplaying them, complaining
too much, imagining them, looking for attention, wasn’t I?
My family and close friends were (and still are) wonderful. They never made
me believe that I shouldn’t be feeling what I was experiencing. They tolerat-
ed my quirks, such as the hypersensitivity that results in a very strong startle
reflex and not being able to stand the feel of certain things against my skin. (It
wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had
fibromyalgia!) My husband, my children, my friends, all helped me when the
pain was bad and the exhaustion overwhelming. But feeling so different and
I knew I was exhausted, but
everyone is tired – why would
I be any different?
Fibromyalgia – living with a controversial
chronic disease

not knowing why take a toll on a person.
I did what many with fibromyalgia do. I withdrew
into myself. By withdrawing, you minimize your
chances of being criticized or attacked by those
who don’t understand your “nonexistent” illness.
But at the same time, because you are internalizing
everything, your symptoms become worse. Your
mind plays more games. And the cycle continues.
I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t
crying because I had it, I was crying because I finally had validation – that this
was real. My pain was real. My illness was real. He told me that many patients
react the same way. How sad.
A year ago, I began a project called 101 Questions About Fibromyalgia. I asked
friends and colleagues for questions, either from the point of view of having fi-
bromyalgia or loving someone who does. I received some great questions but
I also received a long e-mail from an editor whom I had never met. Her angry
e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she
also told me that if having a name for my illness made me feel better about
myself, then it was OK with her.
This is why many people with fibromyalgia don’t speak out. There is no such
anger against people who say they have diabetes or cancer or Crohn’s dis-
ease – but it’s acceptable to brush off, deny, or criticize a claim that you have
fibromyalgia.
Living with any invisible illness can be difficult. Living with one that still is not
accepted by many is so much harder.
Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada.
She is a contributor at Forbes.com, HealthDay News, and other outlets. Find
her on Twitter at @MarijkeD.
I told him I wasn’t cry-
ing because I had it, I was
crying because I finally
had validation – that this
was real.

Jessica Rice
Since becoming ill, I’ve learned that I have the innate ability to make doctors
very uncomfortable – squirmy, even. It’s surprising because I had assumed
medical professionals with decades of experience have fielded every possible
question a patient might ask.
But I suppose I’m not a typical patient. In
November 2011, I was diagnosed with stage
IV lung cancer (bronchioloalveolar carci-
noma, a subset of adenocarcinoma) with
extensive spread to the mediastinal and
hilar lymph nodes. At the ripe old age of
30, I joined a very exclusive club of young,
non-smoking women with this rare cancer.
My biopsies were immediately tested for genetic mutation and found to be
ALK+. Crizotinib had received FDA approval a few months earlier, so it was the
logical first course of action. The pill was successful for three months before
two things happened: toxicity set in, and my cancer grew resistant. Next, I tried
two different chemo cocktails; both failed. I joined the LDK378 trial in Novem-
ber 2012 and had an excellent response. Unfortunately I experienced very
painful side effects which led to dose reductions below protocol. I was likely
getting booted from the trial and taking a break when I had a seizure this past
June.
My MRI showed five brain tumors, along with small
lesions I affectionately termed “brain lint.” After two
CyberKnife sessions, a few tumors shrank, a cou-
ple grew, and five more sprouted from that inno-
cent looking brain lint. It was time for whole brain
radiation.
Through all this I’ve worked with more than a half-dozen doctors and sur-
geons. Some have impressed me, a couple seemed lacking in one area or
another, and one even managed to capture my heart. Regardless, I’ve uninten-
At the ripe old age of 30, I
joined a very exclusive club of
young, non-smoking women
with this rare cancer.
Unfortunately I experi-
enced very painful side
effects which led to dose
reductions below protocol.
Asking the hardest questions: Talking with
doctors while terminally ill

tionally made all of them uncomfortable at one time or another.
It could be my tough questions.
I consider myself a down-to-earth, logical creature; looking at the facts and
hearing the truth is strangely comforting to me. This is why I recently asked,
“What will dying be like if it’s the brain tumors that kill me? Will it be sudden,
like a seizure with an uncontrollable brain bleed?” I had asked this question
long ago in relation to lung cancer, but it now seems more likely that the brain
tumors will lead to my demise.
The chemistry I have with my primary oncologist is spot-on, and though my
questions may still make him uneasy, he has adapted well. For this one, he
started, “I can’t believe I’m going to say this…” and then answered every single
follow-up question I had. Sadly, most cancer deaths are drawn out and pain-
ful, and I don’t think most people
are prepared to hear the details. I
wanted to know, though, and my
doctor didn’t spare me.
I also think it’s sometimes not
what I ask that can rattle physi-
cians – but how. I’m very direct,
and perhaps I don’t get as emo-
tional during appointments as
others expect. This led to a recent
awkward encounter where a doc-
tor literally stopped and stared at
me in an odd moment of silence.
I quickly wrapped up the visit, but
I could tell he was disturbed by
my demeanor. Maybe he didn’t
think I cried enough. Or perhaps I
seemed too resigned to what was
happening to me.
Let’s face it – what I’m discuss-
ing with these doctors is no pic-
nic. While there’s a sprinkling of
terminally ill 30-somethings out
there, we’re not a common sight
in most oncology offices. And my
In response to the Jessica Rice column,
Stanford thoracic oncologist Kavitha Jennifer
Ramchandran, MD, commented in a Scope
blog post about the issues that Rice raised.
An excerpt from her Q&A with Scope editor
Michelle Brandt:
How do you determine when to
broach the subject of end of life?
And does talking about death
change the patient/doctor interac-
tion in any way?
I think many patients are actually
glad when physicians broach the
topic of end of life. It removes some
of the anxiety and creates a partner-
ship where the patients knows they
have a physician who will take care
of them both in good times and hard
times. It also opens up the ability for
both parties to talk about hard topics,
rather than avoid them.

presence alone might make some
uncomfortable.
So, which of my three theories is
correct?
Is my directness off-putting? Does
my logical approach confuse
doctors who are expecting an
emotional young woman? Or is
it that my presence alone makes
them sad? It could be all of those
things, or a combination for some,
but it may also be that even the
most seasoned professionals hate
facing the ugliest truths about
cancer.
We all want to believe our doctors
are stronger and better prepared
for our fate than we are, but that’s
just not the case. As patients we
must seek out the physician that
can not only listen – but also an-
swer with as much honesty as we
seek.
Jessica Rice was diagnosed with stage 4 metastatic lung cancer in November
2011. After a seizure in June 2013, she learned that the cancer had spread to
her brain. Now she is determined to accomplish the priorities on her ‘Frog List’
and takes each day as it comes. Jessica chronicles her journey at
stageiv.wordpress.com. Find her on Twitter at @stage4blog.
Do you find that the families of
terminally ill patients need to
talk about death as much as the
patients do?
Absolutely. Their journey is just
beginning, while their loved ones’
journey is ending. It’s a different path
and struggle. The same questions
and rules apply around information
giving, kindness, and making a plan.
What do you think are the most
important things for doctors to keep
in mind or do when it comes to
communicating with patients with
serious or terminal cancers?
Be humble. We’re not in their shoes.
Be kind. Do unto others as you would
want done to you. Listen carefully. A
hug is okay in the right setting. It’s
okay to cry at times…Cancer sucks.
At the end of the day, find the things
that keep you whole and happy…
It will let you do all the right things
again the next day.

Britta Aragon
“You have cancer.”
For many, these three words feel like
a death sentence. I was only 16 years
old when I heard them.
I had Hodgkin’s disease, diagnosed
after I found a strange lump on my
neck. I went through surgery and chemo, and after about six months, I was
pronounced to be in remission.
Cancer and I came to a fairly quick understanding – physically, at least. But as
many survivors know, the disease’s emotional impact was much more difficult
to manage.
I was bald, overweight, bloated. My skin had lost its radiance, and my peers
felt sorry for me. That was the last thing I wanted.
My friends, family, and relatives wanted me to “move on,” but I was confused
and had no one to talk to. I now know that survivors need support groups,
counseling, and other types of therapy to manage their experiences, but I had
none of that, so I turned to the only thing I could control – food.
For the next several years I would battle with an eating disorder without even
really knowing why. While I tried to recover, cancer came back into my life –
bigger and meaner than before.
In 1999, my father was diagnosed with colon cancer. He was my hero and my
best friend, so the news was a huge blow to me. Still, he was full of strength
and optimism, so I was sure he would get through it, just like I did.
I was right. He beat the cancer four times. But the fifth time, it formed a tumor
in his brain, and after an exhausting eight-year battle, it took my father’s life in
2007.
My friends, family, and relatives
wanted me to “move on,” but I was
confused and had no one to talk to.
After the cancer is gone, the real
work starts

I had crying spells that seemed uncontrollable. I felt like I was in some other
world between here and there, and not really present in my day-today life.
And I was angry. Why should cancer have taken my father, when it didn’t take
me?
Psychiatrists now know that many cancer survivors go through something
similar to post-traumatic stress. I’d venture to say that many caregivers do, too.
And while our medical professionals are trained to deal with the cancer, for a
long time there have been few resources for dealing with its aftermath.
Fortunately today, cancer centers and hospitals
are starting to put into place programs to help
people cope. In the wake of my father’s death,
the one thing that helped me was finding a way
to help others with my experience.
I dove into creating a new blog that would pro-
vide needed information for survivors like me,
and after a couple years, also wrote a book
about the experiences my father and I went through. Working on these proj-
ects not only helped me make meaning out of the challenges I had faced, but
helped me to build a new, healthy life for myself. Today, I eat a healthy diet that
nourishes me from the inside out, and I have a spiritual practice that keeps me
grounded. My work fills me with joy and a sense of purpose. I love interacting
with a community of people who experienced the same things I did, and I’m
always looking for new opportunities to expand the knowledge I’ve gained.
Cancer changes us – there’s no doubt about that. It’s up to us to decide who
we will become.
To honor her father’s legacy, safe cosmetics expert, author and entrepreneur
Britta Aragon created the Cinco Vidas blog, wrote a book to help the newly
diagnosed called When Cancer Hits, and created CV Skinlabs, a safe skin
care line for those with sensitive and medically treated skin.
In the wake of my father’s
death, the one thing that
helped me was finding a
way to help others with my
experience.

Shani Weber
I have Ehlers-Danlos Syndrome (EDS), a rare disease that most doctors don’t
know much about. There are few specialists in the world, so I worked to find
local doctors who were willing to learn about EDS and willing to help me man-
age it.
EDS is a genetic connective tissue disor-
der that causes the production of defective
collagen. Collagen is found throughout the
body so those with EDS can have problems
with joints, skin, organs, GI system, vascular
system, autonomic system, teeth, eyes, and
more.
When I was diagnosed a year ago, I realized that if I’m going to get the best
possible medical care, it’s crucial to educate my practitioners about the condi-
tion. I also knew, though, that I depend upon the expertise and knowledge of
my primary doctor, specialists, and therapists. In other words, I needed to view
my relationship with my providers as a partnership.
It’s not always easy to form a strong relationship with one’s doctors, but here
are some ways I help to make my medical appointments more productive:
• I write a summary of symptoms and interventions.
• I provide charts or graphs, which give my doctors a summary of my
health at a glance.
• I write questions – no more than three per appointment.
• I identify the objective for the appointment so my doctor can start
thinking of treatment options.
• I speak in a calm manner, understanding that a lot of emotion can
take time away from finding solutions.
In other words, I needed to
view my relationship with my
providers as a partnership.
The day my doctor thanked me

Since being diagnosed, I’ve gone to my primary doctor once every two
months or so. Sometimes she orders tests. Sometimes she makes referrals to
specialists. Sometimes she examines me. But every time I come to her, I bring
information about EDS from the Ehlers-Danlos National Foundation, NIH, and
various medical journals. It’s always material that is relevant to the symptoms
I’m currently having, and she always accepts my offerings – laughing about
how I supply her with Sunday-night reading.
On a warm summer day, I had the most incredible appointment with her. We
got through the questions on my list and devised a treatment plan for new
symptoms I was having. She examined my spine and verified that I’m sublux-
ing my vertebrae. I gave her a copy of a study about hypermobility and its as-
sociation with anxiety, and as we were finishing up the appointment she said
the most amazing words to me.
Here is what she said, as I remember it:
I want to thank you for teaching me all you have about EDS. I now know EDS
can mean anything can happen. I mean, we were taught in medical school that
ribs are stable, but you taught me how they can dislocate. Well, it has made
me look at the other EDS patients I have differently. It helps me be open to
what they are saying and has meant they are getting better care. I’m also look-
ing at my other patients differently. Now I keep wondering if each one coming
in with odd or persisting problems could have EDS. I just want to say thank
you.
I replied something along the lines of, “I want to thank you for being a really
incredible doctor willing to listen to her patients, learn about a condition that’s
new to her, research on your own time, and problem solving solutions no mat-
ter how bizarre the symptom is. Thank you for being my doctor.”
Then we hugged it out.
There are wonderful doctors out there who really care and are willing to learn.
It’s important to know that building a relationship of mutual trust and respect
can help both parties: Patients get the care they need, and doctors can be-
come more educated. Together, these partnerships can make a world of differ-
ence.
Shani Weber is a volunteer with EDNF. She advocates for those with EDS,
co-leads a support group, moderates and educates about EDS on EDNF’s
support community on Inspire, presents at conferences about EDS, and helps
others build support groups. Shani lives successfully with EDS thanks to her
husband, children, and brilliant medical team.

Buddy Ruck
“We have treatments that can help you survive for about two years.”
I remember those mind-numbing words spoken by
my pulmonologist on February 18, 2011. I knew the
doctor had a reputation for being one of the best
pulmonologists in the area – but come on, how
could he throw this news at me and make me feel
like I was going to die and that was it? I remember
thinking to myself that there had to be someone on
this earth who survived this disease.
It had all started earlier that month when I called out of work thinking I had
the flu. I went to my PCP to get treated. After a chest X-ray, CT scan, MRI and
bronchoscopy/biopsy, I was told that I had small cell lung cancer.
How could this be happening? No! I have a wife and four young children at
home. They need me! I was deeply depressed and couldn’t eat or talk about
it. I pulled away from everyone because that’s all everyone could think and
talk about and I wanted no part of it. I was told I was going to die and no one
seemed to understand how I was feeling. Between not eating and loss of wa-
ter weight through my tears, I quickly lost 20 pounds. So many thoughts went
racing through my mind. Just a few weeks earlier I had a great life – a great
family, career, friends and health. And now it was all gone in a matter of a few
weeks? How could God let this happen? Why me?
What did I do to deserve this? I was so angry that I
actually told God that I hated him. I knew it was the
wrong thing to do but I couldn’t stop myself from
feeling this way.
Like many, I decided I wanted to educate myself on
what I was up against. I remember trying to search
for any longterm survivors of SCLC. I found one forum where there was a man
who was a four-year survivor but he hadn’t posted anything new in more than
three years. This is the only story I could find on the Internet showing some
It had all started earlier
that month when I called
out of work thinking I
had the flu.
I don’t know why it made
me feel better, but it did.
I guess it gave me some
hope to hold onto.
Hope and faith are powerful medicine

length of survival. I don’t know why it made me feel better, but it did. I guess it
gave me some hope to hold onto.
While sitting with my wife in the waiting room before my PET scan, we cried
together. I was so scared and had many questions. Had it spread all over my
body? Will they tell me I only had months or weeks to live? When I met with
my oncologist to get the results a few days later, I said to her, before she could
say a word, “Doc, do I have any chance of beating this? My pulmonologist
told me I may live up to two years with treatment.” I closely watched her body
language. I knew I had put her in a difficult position, but what else could I do? I
needed to know. She told me I was staged with lim-
ited SCLC because the disease was confined to my
right upper lobe with no lymph node involvement.
She replied with confidence, “Yes, you can beat this.
We are treating to cure!”
I can’t describe how much weight was lifted off of
my shoulders with just those two sentences. That
was the turning point for me. It restored all hope, all
faith. I can’t explain it, but at that moment I just knew I was going to beat this
beast. Soon after being diagnosed, friends and their church members brought
us meals and comforting words. These acts of kindness meant more to us than
they will ever know. I knew God was there watching over me and my family.
I then met with my radiation oncologist, who offered me the opportunity to
sign up with a protocol that would allow me to be treated more aggressively
than the normal treatment protocol. Another benefit
to this protocol was that I would be helping future
SCLC patients as they would be closely monitoring
and documenting my progress. There was no bet-
ter way to make up for my prior mistake of blaming
God. It was a win/win/win, and I couldn’t wait to get
started.
Thanks to the strong support and unconditional
love of my family, friends and God, I completed
all treatments by August 2011. Yes, the side effects were challenging – but I
was alive! I remember looking into each of my children’s eyes afterwards and
being so thankful that I was able to be there with them, and for them. I still
suffer from “scanxiety” before every CT scan, which I believe is true with most
cancer survivors. Cancer is my last thought before I fall asleep and my first
thought when I wake up. I also think about cancer every time I feel a new pain.
It’s my new normal. But I’m still grateful.
Cancer is my last
thought before I fall
asleep and my first
thought when I wake up.
Looking back on my ex-
perience, I believe the
power of hope and faith
are underestimated in the
medical field.

Looking back on my experience, I believe the power of hope and faith are
underestimated in the medical field. I believe some doctors think and act too
logically. They sometimes act on statistics alone
and not on the individual. Yes, it’s important to
be honest, but I don’t believe it’s okay to put a
timeframe on the patient’s life or talk in a manner
of no hope. Statistics are just numbers and they
don’t tell the whole story. They don’t account for
your intangibles, your desire to fight and your
faith in God. Every case is unique and no out-
come is ever the same. Miracles happen and
happen often – I’m living proof of it.
This is why it has become a passion of mine to
help those who are newly diagnosed or are hav-
ing difficulty dealing with this disease. New treatments are being discovered
and implemented daily. I encourage patients to never give up hope or faith
because I believe they are key for survival, not medicine alone. Stay strong!
Buddy Ruck, a technology manager, lives with his family in Charlotte, N.C.
Statistics are just
numbers and they don’t
tell the whole story. They
don’t accountfor your
intangibles, your desire to
fight and your faith in God.
Every case is unique and no
outcome is ever the same.

Alisha Bridges
Psoriasis has affected every aspect and transition of life that I’ve encountered
thus far. I’ve had the itchy, flakey, non-contagious autoimmune disease since
I was seven years old; I’m now 26. As I approach the 20-year anniversary of
encountering the disease, I think of how my treatment has evolved, and as I
reflect on the differences in treatment between then and now, it’s a Catch-22
in some ways.
It all started after a bad case of chicken pox. My scars
weren’t healing correctly. They looked crusty and
inflamed. After more than 90 percent of my body re-
mained covered with this mysterious rash, my grand-
mother decided it was time for me to see the doctor,
who diagnosed me with psoriasis. The positive side
was that I had Medicaid as insurance, and it covered
any and everything I needed. But unfortunately, due to
my age, there weren’t many treatment options. From
the age of seven to 19, I was prescribed an array of topical treatments and
UVA light treatment, none of which were really effective in ridding me of psori-
asis. The treatments just kept it at bay.
Once I went to college, treatment became more challenging. First, I went out
of state for college, so the only time I could get treatment was when I came
home for winter vacation. This particular treatment required me to stay in the
hospital for three weeks, which was basically my entire winter break. Once I
realized a treatment twice a year wasn’t going to be effective, my family at-
tempted to find me a doctor near my school. The only caveat then was that
Medicaid is state-to-state; therefore I was removed from hometown Michi-
gan Medicaid and required to apply for Alabama Medicaid where I attended
school. I wasn’t approved for Alabama Medicaid, though, which caused me to
go essentially without insurance, aside from the simple coverage the school
offered for emergencies.
After a few years of being in school without any insurance, I finally landed a
job with coverage and started my routine doctor visits. This time I had more
options. As a child I couldn’t consider biologic injections and oral medications,
From the age of seven
to 19, I was prescribed
an array of topical
treatments and UVA
light treatment
My two-decade battle with psoriasis

but as a working adult these options became available to me. The flip side
was and remains that the medicine is harder to get because of high deduct-
ibles and regulations by insurance. I’ve also found that it’s harder to maintain
insurance due to life situations such as layoffs or career changes.
There are vast differences between having this disease as a child through
adulthood, yet there are a few similarities that I
experienced in both phases of life. Doctors have
fought to get me treatment no matter what age. As
a teenager with severe psoriasis, doctors attempt-
ed to get me approved for Enbrel, which has only
been authorized for adults over 18. I’ve even had
doctors battle the insurance company to gain ap-
proval and decrease the cost of various medicines.
Though there have been many things that have
changed there is one aspect of psoriasis that is too
often neglected. From childhood until now there have been no coping strat-
egies offered to me when dealing with this disease. Out of the approximately
ten doctors I’ve seen in regards to my psoriasis, not one inquired on how the
condition affected me psychologically. Although this disease appears to be
a battle from the outside, the mental anguish faced as a psoriasis patient is
life-altering and can even be virtually paralyzing. Patients need to know that
there are other people in the world with this disease, and that there are re-
sources outside of medicine to help them cope. Coping strategies are just
as important as treatment. Although I have found organizations such as the
National Psoriasis Foundation to help manage this disease, it wasn’t because
of professional recommendation. I found them on my own at the age of 24.
I can only fathom how having support would have enhanced the overall quali-
ty of life for me if a doctor would have made me aware of these organizations
at the age of seven. Although I have struggled to find a successful treatment,
knowing that there’s support for the mental aspect of psoriasis will give me
peace until a cure is found.
Now, psoriasis does not define me - I define it.
Alisha Bridges is the creator of Beingmeinmyownskin.com, where she blogs
about life with psoriasis. She’s a community ambassador and volunteer for
the National Psoriasis Foundation.
Out of the approximately
ten doctors I’ve seen in
regards to my psoriasis,
not one inquired on how
the condition affected me
psychologically.

About Inspire
Inspire (www.Inspire.com) is the trusted place for patient
engagement. Our online community of 450,000 patients and
caregivers, organized by medical condition, helps industry
connect with patients in order to accelerate and improve
research.
Find out more at http://corp.inspire.com, or by contacting us at
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Experts by experience 2014: A compilation of patients’ stories