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5 Ways I Navigate This Messy, Flawed Healthcare System as a Chronically Ill Person

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Going to the doctor used to be really easy. Before being diagnosed with multiple chronic illnesses, it would usually take me one simple visit to my primary care doctor for them to identify all my problems and start treating them. However, in the world of someone with half a dozen subtle, overlapping, and interacting chronic health conditions, things are hardly ever this simple. As a chronically ill person, the intent, complexity, efficacy, and structure of my healthcare has completely changed.

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1. I am now the driving force behind my own progress.

In 2017 I have seen six different doctors (three primary care doctors, one orthopedic surgeon, one allergist, and one cardiologist). This would not have been the case had I not taken ownership of my own care. None of the primary care doctors I saw referred me to specialists, so I took it upon myself to find them. (Thankfully my insurance allows me to do this.) I did a great deal of research on my own — and when I wanted to look into a new disease avenue, I simply picked up the phone and made an appointment with the necessary specialist. I wouldn’t have half the knowledge I currently have about my own body had I not sought out these physicians myself.

2. I never show up to the exam room unprepared.

I like to joke that I have to “study” for an appointment with a new doctor. Before my appointment, I make sure I have thoroughly researched whatever disease I may be evaluated for, and come with questions for the physician. I also have a document on my laptop filled with pages of notes on my detailed family history as well as all of my specific symptoms system by system. I bring this every single time, as well as the ever-growing green file folder of notes and test results I accumulate from each doctor’s visit. Having specific questions to ask each doctor means I am a lot more likely to leave having made some progress, and all the notes mean my conversations with the doc are even going to be brain fog-proof. It’s worked pretty well so far!

3. I’m the boss now.

People in the chronic illness community often talk about “firing” bad doctors. As someone who has had bad experiences with physicians before, I am wholeheartedly behind this. Sadly, almost all chronic illness patients run into at least one doctor who denies their patient’s experiences, is close-minded, or is simply unwilling to investigate the necessary avenues relevant to their disease. I’ve only truly “fired” one doctor, but it is helpful to remind myself of the true power dynamic whenever I see a doctor. A physician’s role is to help me figure out the cause of my pain and to start treating it as best they can. If that is not happening to my satisfaction, I am free to move on to another doctor and try again.

4. Doctors can be, and often are, totally wrong.

I may not have been to medical school, but living in my body gives me some insight into my own condition that my physicians will simply never have. I know my body best, and sometimes I even know more about my rare conditions than my doctors do. I have had doctors swear that I do not have postural orthostatic tachycardia syndrome, Ehlers-Danlos syndome, food allergies, arthritis, and more — and yet all of them were wrong. Being right when your doctor is wrong is a scary and inverted dynamic that almost all chronically ill people deal with. Don’t do anything against your doctor’s wishes that is potentially dangerous, but you may have to cling to an idea through great opposition from many incredibly intelligent and well-educated people — only to be proven right much later.

5. Build your team (medicine à la carte).

Healthcare is incredibly complex, and while I wish it was a one-stop-shop, that simply isn’t realistic right now. As a patient, I have had to assemble a team of individuals to manage me. My case is too complex for one doctor to totally handle. So I have to pick and choose, hopefully getting the best out of each individual physician and assembling a portrait of complete care from all the pieces.For example, my general doctor adamantly insists that I do not have an autonomic nervous system disorder, but my cardiologist (who has written dozens of studies on POTS), believes I have one. My primary care physician is treating me for Hashimoto’s disease, however, which is beneficial, so I choose to ignore that other flaw as I am getting help for POTS elsewhere.  No doctor is perfect or has the right answers. While it is incredibly important to hold your physicians accountable, you also have to pick your battles.

Seeking healthcare as a chronically ill person is a process that requires a lot of courage and a lot of patience. It’s incredibly difficult. But by being prepared, asking tough questions, never giving up, and directing my own care, I’ve made some progress I am proud of — even in this messy and flawed healthcare system.

Thinkstock photo by pada smith

Originally published: November 11, 2017
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