When I was about 25 years old, I
started to have strange migrating pains in the core of my body. These pains
were mostly in my lower back, hips, neck, or shoulder blades and were
accompanied by digestive disturbances of various kinds as well as an overall
sense of inflammation and discomfort. They would come and go without warning,
vary in duration and severity, and did not appear to have any clear connection
to my activities. These “flare ups” were frequent enough that they severely
diminished my quality of life.
So, I did what most sensible
uninsured young adults would do: I ignored it. It was the early 1990s. the vast
information highway known as the internet was not yet in full swing. If a
person wanted to find something out, she had to go to the library. I figured it
would eventually go away on its own.
When about five years had passed without
any relief, I decided it was time to enlist the help of a medical professional.
I scrounged up a few bucks and off I
went, mentally prepared to accept my diagnosis, no matter how dire. My symptoms
were so severe, there was no doubt in my mind that she would find something: a
tumor on my spine, a vitamin deficiency, a virus, a hormonal imbalance…
“You’re in perfect health,” she
said looking over the results of some blood tests she had ordered, “There is
nothing wrong with you.”
“But there is something wrong,” I
objected insubordinately, “Can we do more tests?”
She looked at me impatiently, “What
do you suggest?”
“I don’t know,” I stammered, taken
aback by her sudden shift in tone, “You’re the doctor.”
“I’m not going to give you
anything,” she stated, clearly suspicious of my motives. “Take Tylenol.”
And, with that, she abruptly ended
the appointment.
And thus, it commenced: the decade
of doctors. Though I was still uninsured and limited financially in my ability
to seek quality advice, I went through a lot of diagnoses, none of which stuck.
In fact, what I mostly experienced were versions of the exchange above. “You
seem to be a very anxious person,” said one. “You probably have some autoimmune
condition, but you can’t afford the medicine,” said another. I had my
gallbladder removed, got countless scans, spent days on a heparin drip and once
wore a heart monitor. Many just did not seem to believe me. They implied, in
one way or another, that I was looking for drugs, even though I never asked for
any.
Around my early forties I started
to wise up.
“I’m a pariah.” I said to a
coworker, “Not only are they ill-equipped to help me, they hate me!”
“Well, what are you going to do?”
She asked.
“There is only one course of action. If you
can’t beat ‘em, join ‘em,” I trumpeted. “I’m going to go to nursing school!”
The notion was not that far-fetched.
I worked primarily as a waitress at that time, but I had a master’s degree in
Entomology and taught basic biology classes at the community college level. I was
broadly intellectually curious, read a lot of science books and possessed
fundamental knowledge of the structure and function of living things. However,
though I could provide a detailed description of the process of photosynthesis,
bark beetle anatomy or the lifecycle of Basidiomycetes, I knew practically
nothing about the human body.
And so, with my secret mission to
solve the mystery of my roaming, unpredictable discomfort firmly hidden beneath
a well-honed façade of legitimate desire, I went to nursing school and, about
two years later, started my new career. I forged ahead as a nurse for several
years and then went crawling back to the relatively less stressful climate of
the classroom. However, the short-lived nursing experiment was not in vain. I
had gotten what I needed: knowledge.
In the meantime, things were
really heating up on the vast information highway known as the internet. Now,
there was a plethora of data available to me. I developed hypotheses, tried what I felt were
“evidence based” interventions, and analyzed my results. In addition, I found
out that there were many people like me with similar experiences: soundly
rejected by medical science and desperately searching for answers. There were
discussion pages and blogs. I did not participate but I read them obsessively:
combing the text for clues.
As I entered my late forties, I
would still go to see doctors, but our goals were at cross purposes. They
wanted me to get a pap smear and control my asthma. I wanted to find the cause of my mysterious
condition. However, I was wise enough, now, to realize that I sounded like a lunatic,
so I stopped bringing it up. If I wanted
to get some piece of information from them, I would work it casually into the
conversation so they would not label me as a “drug seeker” or a
“hypochondriac”.
In my early 50s, my frustration
mounted as the condition continued to plague me. All the work I was doing and
still no answers. Something would seem to help for a while and then it would
not. The difficulty of finding patterns and solutions was compounded by the natural
unpredictability of the condition. I would joke that somebody had made a doll
of me and was capriciously sticking it with pins. I did not really believe
that, but I was beginning to allow some sketchy explanations on to the table.
As an ecosystem of greedy
charlatans preying on the bounty of hopelessness bloomed exponentially, it
became harder and harder, even for a hardnosed science person like me, to
separate fact from fiction. I explored explanations good and bad: leaky gut,
vitamin D deficiency, histamine overproduction, dysbiosis, hypersecretion of cortisol,
dermoid cysts, parasites, malabsorption, floating kidneys, Lyme disease, sphincter
of Oddi dysfunction, food intolerances, toxins, motility disorders, childhood
trauma, spondylitis, sphenic flexure syndrome, myofascial pain, fibromyalgia,
IBS, GMOs…
And now I am fifty- three. I have
strange migrating pains in the core of my body. These pains are mostly in my
lower back, hips, neck, or shoulder blades and are accompanied by digestive
disturbances of various kinds as well as an overall sense of inflammation and
discomfort. They come and go without warning, vary in duration and severity,
and do not appear to have any clear connection to my activities. These “flare
ups” are frequent enough to severely diminished my quality of life.
Ideas anyone?
