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Why I Have to Be an Advocate as a Medical Zebra

When I think of an advocate, my first thought is someone who speaks up for a child during a custody battle, or a person who handles the daily needs of a person with a severe disability.

What I’ve come to learn over the last two years is that an advocate can be so much more versatile. One could hire an advocate for them, or one can become an advocate for themselves or others. I’ve become my own advocate, but also find myself becoming more of an advocate for others as well.

It turns out, I’m not the only person in my community whose health needs aren’t being met. Over the years, I’ve become something of an expert patient. I know what lab tests should be run, I know how to interpret the ranges on those labs, and I know what can be done to make the next move for getting a diagnosis and the help I need. I’ve seen at least three other people in my town of 7,000 run up against medical mysteries and doctors who don’t really care to dig any deeper than their old textbook on the shelf.

The problem comes down to a few possibilities.

First, doctors just don’t have time to read new research. This is my least favorite “excuse” because as a teacher, I not only had to see all my “patients” at the same time, all day long, but my workload consisted of a lot of unpaid hours, for a much smaller salary than a doctor.

Secondly, rare diseases just don’t have enough research available for doctors to make an informed diagnosis. Again, this is problematic because if I, as a non-medically trained individual, can find the research to support my myriad of illnesses (and even how they function as comorbidities), then the doctor certainly has access to the same information.

Third, the doctors practicing today are so overburdened with expectations, legalities and heavy case loads that they’ve stopped caring to go above and beyond. This is my best guess at what’s happening. I had a doctor, who was a general practitioner, tell me that if my endocrine journals disagreed with his conclusion that lab values were not acceptable, that I was free to find a new doctor. That was not my intention. I just wanted this doctor to be educated about his patient. Instead, I believe the ego of the M.D. unfortunately got the best of him. And there’s at least a dozen other doctors in my town who operate under the same premise that their M.D. is worth more than any research I could possibly find. Even if that research came directly from esteemed research institutions like the Mayo Clinic.

Therefore, I’m an advocate. I don’t have a medical background. I can’t give medical advice, but I definitely have experience.

Eventually each medical zebra learns along the way that we all need an advocate. We need someone to look again and find the discrepancies in our lab work, the items which look “fine-ish” independent of the others — but combined indicate a problem.

An advocate is someone who can speak up for you when you’re too flustered, and tired of being told you’re just a busy parent, and your symptoms are nothing. Because as so many of us have learned, that “nothing” is usually something, and it deserves to be considered.