I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge. I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over. More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.
*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info. If you come back another day (and I hope you do), you can skip this part!
Today's assignment: Lesson Learned. What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make that same mistake again. Write about it for 15 today.
One very important
lesson I have learned, though it took quite a while and quite a few bad
examples for it to actually sink in, is that doctors are not the ultimate authority in my health care and treatment
- I am. Don’t get me wrong: I admit that they
have a lot more education and experience than I do with regard to human
anatomy, diseases, and treatments. They
do not, however, have more experience with my
body.
When I was growing up,
I always took it as a given that doctors were experts: they knew everything, so
I should basically take their word as law.
Then again, when I was a kid, I viewed pretty much all adults as infallible
authorities: parents, teachers … they were in charge, and their position gave
them the right to tell me what to do. It
never even occurred to me to question their judgment.
Somewhere around
adolescence, I learned better. I defied
my parents when I knew better than they did (my mom has since admitted that she
was wrong), and even challenged a professor with whom I disagreed (that didn’t
work out so well for my grade, but at least I had the satisfaction of knowing I
was right). For some reason, though, I
still believed that my doctors were beyond reproach.
If my only experience
was going to the doctor when I had a sore throat, that might not be much of an
issue. Unfortunately, I’ve had much
bigger health problems than that. Several
years ago, I started experiencing a number of symptoms that I couldn’t
explain. My entire body ached as if I’d
just done an overly intense workout. It
took me hours to fall asleep, and I’d wake up a couple of times throughout the
night. Even if I did actually sleep
through the night, I was as exhausted as if I’d pulled an all-nighter. I had headaches every day, and an overall
feeling of just not being well. After a
slew of tests, referrals, and specialists couldn’t figure out what was wrong,
they decided it was all in my head. A few
more doctors said I
was just depressed. The worst part
was, though I knew how much pain I
was in on a daily basis, and I knew what depression was and that I did not have it, these doctors actually made
me start to question myself. I wondered
if I was going crazy, if I was a hypochondriac, if I was in denial of something
I didn’t even understand. Then a couple
of nurses I knew (not as a patient) suggested that it sounded like I had something
called fibromyalgia. I’d never heard of it, so of course I ran
home to look it up. Though I’d exhibited
nearly every symptom
and overlapping condition, the doctors still didn’t see it, because they
weren’t as familiar with the disorder.
It took four more years before
I finally got that diagnosis; it took four more years before any doctor attempted
to treat my symptoms.
Somewhere along the
way, I remember listening to the radio in the car on my way home from work,
when John Tesh came on with his Intelligence
for Your Life segment. He offered “5
Signs it’s Time to Fire Your Doctor,” reminding listeners that in essence,
doctors are our employees, and that if we are not satisfied with their work, we
could – and should – let them go. This
was a complete revelation to me. I
always thought I had to be a good patient, had to try hard to earn my doctor’s
respect. I had never even considered the idea that it
was really the other way around.
I thought back to the
number of times when I was seen by “bad employees,” and the effect these
doctors had on me. A gynecologist with a
personal bias against my choice not to have children disregarded my complaints
of severe pain, thereby missing the fibroids that later led to my hysterectomy. An emergency room doctor dismissed my acute pain because
he saw me laughing and tried to discharge me without an examination. Countless doctors suggested that I was
depressed, rather than do a simple tender
point exam for fibromyalgia.
These days, I take a
much more active role in my own healthcare.
Not only do I research every symptom, diagnosis, and medication, but I
research the doctors, too. Just as an
employer would do a background check before hiring an employee, I do my own
reference check, so to speak. Websites
such as Health Grades, Vitals, and Rate
MDs allow me to see not only when and where a doctor was educated and what
his or her specialties are, but what other patients have to say about their
experiences with the doctor. Even when I
decide on a doctor, it is not a lifetime commitment: if I am not satisfied with
the treatment I am receiving, I move on to someone else.
In general, I pride
myself on being very intelligent and a quick learner. This lesson, unfortunately, took me far too
long to really grasp. Now that I have,
however, it is my mission to share what I’ve learned with anyone who seems to
need the advice:
- If a doctor doesn’t listen to you, find another doctor.
- If a doctor suggests that nothing is wrong when you know that something is not right, find another doctor.
- If a doctor dismisses your ideas (such as trying alternative treatments), find another doctor.
- If a doctor is not helping you, find another doctor.
Most of all …
- If a doctor makes you feel bad about yourself, FIND ANOTHER DOCTOR.
**If you like what you read, tell a friend. In fact, tell me, too - post a comment below! If you don't ... well ... I'm all for honesty, but ... please be gentle!
