One Step at a Time:
Hope, Resilience, and
Courage in
Living with Fibromyalgia
by Elizabeth Joniak-Grant, Ph.D.
M
y life of chronic pain began
in Los Angeles when I was
in a car accident at the age of
27. Despite my diagnosis of chronic whiplash and undergoing
numerous medical procedures, nearly every
physician, specialist,
physical therapist,
and attorney I
encountered
told me
I would
make a
full recovery if I
was patient and practiced selfcare. So when I was diagnosed
with “severe fibromyalgia” at the
age of 32, I was devastated. All I
thought was, “This is not part of
the plan!”
T
here was no room (or time!)
for a chronic illness. I was
enrolled in a prestigious Ph.D.
program and planned to finish
my degree, get married, obtain a
good university teaching position, write a book, get tenure,
and then start a family. Instead I
was told I had a life-long debilitating illness that would make
having a full-time job highly unlikely and caring for children especially difficult. I could hardly
catch my breath and sobbed the
entire drive home.
S
ociety often assumes the FM
sufferer is
a woman
with
children
and possibly grandchildren. When I read
articles, professional
resources, or view ads
about FM or chronic
pain, I rarely see anyone who looks like me.
This is likely due to the
fact that “most people are diagnosed [with fibromyalgia]
during middle-age and prevalence increases with age.”
A
s a result, young women
(and men) with FM and their
struggles--dating, getting married, deciding whether to have
children, pregnancy, getting a
job and establishing careers with
a chronic illness, etc.--are often
overlooked. This is particularly
troubling in light of a recent
Mayo Clinic study that found
“young and middle-aged fibromyalgia patients report worse
symptoms and poorer quality of
life than older patients.” These
reasons are why I share my struggle to start a family with you.
M
y quest to start a family
began in early 2010 when
I considered if I should have
Winte r 2 01 4
children. I worried that having
children with a chronic illness
was a selfish decision; that would
cause my future kids to miss out
on having a “healthy” mom. It
was one thing to have kids and
later become sick, but was it okay
to have kids knowing I wasn’t
completely healthy? I worried
whether I could lift, hold, and
carry a baby and how my child
and husband might suffer during a chronic pain flare. Many
conversations with family and
friends convinced me I was going
overboard. My sister and others
pointed out that every parent
has restrictions in what they
cannot or will not do with their
child (paintball, anyone?!) and
my restrictions were no different. Although I would be unable
to do certain activities with my
child (no roller coasters for me!),
I would shower them with love,
affection, and attention, which is
much more important.
M
y FM and chronic pain struggle could also teach them
compassion, patience, and perseverance. And, many of my friends
pointed out that there are plenty
of activities they do not do with
their children (e.g. paintball, anyone?) merely because they choose
not to. Every parent has restrictions in what they can or will not
Fibromyalgia & Chronic Pain
Life 19