My pain journey began with a bicycle wreck at the age of
10. As children will do, I went speeding
down a hill, hit some loose gravel, flipped over the handlebars, landed on my
knees, and did a terrific slide along the pavement. My knees were torn up, but I think I got
about a 5.9 for style. The girls at
school all thought my knees were gross because they broke open and bled every
time I bent them to go up the stairs, but the guys thought I was cool, at least
for a while. Anyway, the skin grew back
over my knees, but my leg pain never went away.
My mother, who has always been an incredible advocate for me, took me to
doctors, including ones at the Cincinnati Children’s Hospital, which is the
number three children’s hospital in the nation, but we were always told the
same things.
- We don’t know why her legs hurt
- It’s growing pains
- Or, my favorite, there’s nothing wrong with her,
so don’t encourage her or she’ll grow up to be a hysterical female.
What that taught me was that my pain wasn’t important, so I
taught myself to suffer silently, to hide behind a smiling face. On the days that I couldn’t do that, I hid in
my room, or up the crabapple tree with a book, where no one could see my tears.
As I grew up and out on my own I learned to manage my “mystery
illness.” On those occasions when it
would flare up beyond my control I would seek yet another doctor. Again, I was told such things as
- We can’t find anything wrong with you. Why don’t you see a psychiatrist?
- Who would say, I can’t find anything wrong with
you. Go back to your doctor.
- And, my new favorite, you’re a woman, you’re
going to hurt, get used to it.
Once again I was taught to hide my pain behind a smile, to
suffer silently in public and save my tears for when I was alone.
Finally, after moving to Nashville in 1997, 24 years after
my chronic pain began, I found a doctor who listened to me. He was honest and told me he had no idea what
was wrong with me, but he vowed he would find me someone who could figure it
out, and he eventually did.
In 2007, after having been bedfast for nearly 16 weeks
thanks to my latest flare, my primary care doctor hospitalized me for something
like the twelfth (maybe it was just the seventh) time that summer so I could
get a rheumatology consult, which my mother-in-law had urged me to request. The rheumatologist asked me a few questions,
poked on some pretty painful spots on my body, looked at me and said, “You have
fibromyalgia.” I sat there and thought
to myself, “So…this monster DOES have a name! And if it has a name I can fight
it.” While this was running through my
head the doctor silently wrote a prescription, handed it to me without a word,
and turned to walk out. I asked, “Is
there anything else I can do??” He
tossed, “Find someone to talk to,” over his shoulder as he walked out the door.
I only knew one person with fibro, so I called my mother-in-law. Shelia and I had always gotten along well,
but because of fibro we became friends. We thrilled in
conversations about our weird symptoms because there was finally someone who
understood, someone who just GOT it.
Once, during one of our talks, Shelia said, “There have to
be more people out there. Why don’t you
find them for us?”
I put an ad in the paper, found a meeting place, and set up
everything. No one came. I tried it again. No one came.
I wanted to give up, but Shelia encouraged me to give it one more try. It worked.
We found three other people who “got” us.
That’s how Fibro Friends began, and today we have over 500 members
spread over 8 groups that either already meet or are forming in Tennessee. That’s 500 people who understand what it’s
like to live with chronic pain. We get it.
Sadly, Shelia passed away last month, the day after Mother’s
Day. In her honor, and to raise funds
for awareness and research, we’ll hold the first annual Shelia’s Walk in
September 2017. We chose September
because if you know Nashville then you know that we have numerous walks in May
when Fibromyalgia Awareness Day is, and we don’t want to get lost among
them. But we also chose September
because Shelia’s birthday was September 2nd, and it’s Chronic Pain
Awareness Month. What could be more appropriate? I feel Shelia’s Walk is the least
I can do for Fibro Friend number one, the least I can do to thank her for being my friend.
What I now take away from my pain journey is the importance
of support and understanding. I could
not have made it this far without Shelia, without any of my Fibro Friends for
that matter.
I live with chronic pain, but I am not an addict. I am a daughter, a sister, a mother, a
friend, a volunteer, a pain advocate. I
am not seeking drugs. I AM seeking a
better quality of life. To cope with a
life filled with chronic pain we need support and understanding, not just from
each other, but also from the medical community and our government. This is where the National Pain Strategy
comes in.
Studies from the Institute of Medicine (IOM) and Department
of Veterans Affairs reveal that 4 in 10 American adults and 80 percent of
veterans returning from Operation Iraqi Freedom and Operation Enduring Freedom
suffer from chronic pain, at a cost of more than $600 billion annually (Institute
of Medicine, 2011; Lew HL, et al., Journal of Rehabilitation Research &
Development, 2009). Despite this significant toll, plus the fact that pain
remains the number one reason that people seek care from a health care
provider, our nation continues to invest meagerly in chronic pain research
(only 4 cents per patient in 2015); poorly trains and educates our health care
providers on the proper assessment and management of pain; and provides minimal
to no reimbursement for multidisciplinary non-pharmacologic pain management
strategies – a key recommendation called for in the new CDC Guideline for Prescribing Opioids for Chronic Pain.
Implementing the objectives of the National Pain Strategy will change this! The NPS provides a clear
and actionable roadmap that will generate critical population research and health
services data; advance prevention and pain care strategies; address disparities
in pain assessment and treatment; improve pain service delivery and
reimbursement; improve health care provider education and training; and foster
public education and communication strategies. Further, the NPS clearly
delineates short-, medium-, and long-term deliverables, identifies key federal
and non-federal stakeholders, and recommends strategies to measure impact.
We need the National Pain Strategy. #ISpeakForPain, and I speak for the
#NationalPainStrategy.
Why don’t you speak, too? Take a photo of yourself holding a sign that says #ISpeakForPain and tell why you are speaking out, and then post it to social media. If you live in Tennessee, send a letter to Senator Lamar Alexander asking that he send a letter
to the Department of Health and Human Services by the end of June requesting a written implementation plan
and corresponding budget from them to be submitted within 60 days of the
Committee’s request. If you live elsewhere in the United States send a letter to you legislative health aide asking them to contact Sen. Alexander about the NPS.
Note: This post combines an excerpt from presenation given in Memphis, Brentwood, and Knoxville, TN, to kick off the #ISpeakForPain campaign, as well as a portion of the letter sent to #SenatorLamarAlexander to request that he speak up for the National Pain Strategy.
