Yesterday a phone call from an endocrinologist’s office left me seething. An administrator — she didn’t offer a name or title — indicated in a polite but vaguely superior manner that I was not requesting services at the correct clinic. There was an icy undertone, as if the fact that she had to contact me to explain all this was putting a huge strain on the clinic’s resources. It took me a good ten minutes of cajoling, conniving, convincing, and just plain bullshitting to get her to understand that it wouldn’t be a complete waste of the endocrinologist’s precious time for me to come in, but it wasn’t until I uttered the magic word ‘fibromyalgia’ that she granted me status as a legitimate patient. What is this place, anyway? Am I creating such an inconvenience that I cannot be seen by this doctor unless I successfully pass vetting by a bureaucratic toady with a list of secret code words?
I was not surprised that the doctor at this clinic was reluctant to take me on as a patient. My referral, sent weeks ago from my PA at Fort Riley, had been rejected on the grounds that my “specific” needs did not “encompass” the doctor’s specialty. It was a possibly a coding error made by the insurance company making the authorization for services. The nurse from my referring clinic spent several days making phone calls to the clinic as well as my insurance company on my behalf, smoothing over the misunderstanding and pleading my case. I don’t know if that is even part of her job, but she knows that I am sick. She has seen me too many times over the last few months to not want to help. And she must have deduced from the cryptic, noncommittal responses coming from the endocrinology clinic that I would need a champion.
It’s been difficult to get good medical care in Kansas. My tiny local Veterans Affairs clinic seems to always be bogged down and overwhelmed; I can’t get in but once or twice a year, and that is just for routine blood tests or ‘Well Woman’ visits. God forbid anything goes wrong in between! When I lived in the Black Hills, I had the best VA care. If a non-emergent matter arose, chances were I could get a same day walk-in appointment, and the staff listened to my needs. Here the story is different. During a non emergency episode when I needed immediate advice (which happened in between my allotted visits), the local VA staff either misunderstood or misjudged my situation, leaving me to seek medical attention elsewhere. After the incident I plan not to return to the clinic. Luckily I can still turn to the clinic at Fort Riley, where I trust my physician and nurse. The problems arise when they have to refer me to specialists.
I realize that it’s a Me Problem. It’s not the world that’s strange, it’s me. I’m the misfit. I take supplements of turmeric and holy basil and treat hormonal breakouts on my face with a salve made from an old Native American recipe. I use cabbage poultices and rub herbal oils on my forehead to fight off migraines. I am treating my current ailments using natural remedies instead of chemicals and drugs. I abhor drugs. I am probably a traditional doctor’s worst nightmare. So if/when I go to a specialist and invariably open my big fat mouth to spout things like “I am researching home remedies and the use of ethnobotany for possibly treating my migraines and hormonal imbalance” or “I really don’t want to take any more pills” I run the risk of being written off as a crazy jackass. Even the mere mention that I take herbal supplements and seek chiropractic care results in odd looks, as if I am lapsing into an unknown language during the dialogue.
Yet my specialists don’t seem to take the time to actually read the medical records my referring clinic is required to fax to them. Instead I am interrogated with rapid-fire questions, in a patronizing tone. If they had read the records, they wouldn’t have to ask me the questions, and we would have time to discuss the most important part of a visit to any doctor: what type of treatment is truly best for the patient? I am sure these specialists are brilliant, and with limited amounts of time in their work days they have to make quick decisions based on what information they gather from patients. I probably don’t help with my rambling history of odd symptoms intermingled with home remedies and Native American medicines. But damn it! They are supposed to be highly educated professionals with vast stores of knowledge about various types of treatment. Why are they so single-minded about ramming more pills down my throat? And when did practicing medicine medicine come to include treating patients, and potential patients, like children, or worse yet, like criminals who have to prove their validity before receiving care?
Maybe I am wasting their time with my herbal supplements and quackery treatments. But it’s my body. I don’t think it’s unreasonable to want better quality than the living death sentence my very first neurologist prescribed, something to the effect of “take these pills every day for the rest of your life and pray for early menopause to ease the pain of your migraines”. The nerve! Certainly that can’t be the best option, for anyone. If the care I am receiving here is so laughable, there is at least one thing that I have taken from my experience, and I do consider it a blessing. I, and only I, am completely and unequivocally responsible for my health. Doctors don’t know everything. Medical professionals can and will do their best (I hope) for me, but it is ultimately up to me to take care of myself. I can make decisions about my body and my health, because sometimes there will be no one else willing to take the steps to ensure my health. If it takes being a medical misfit, then so be it.
I am my own best doctor, nurse, and patient!