Yes, you read that right.
If you’re a medical professional, read this to the end before you DM me.
After being diagnosed with my primary disability in August 2014, I’ve had a lot of ups and downs in the medical world. Some seasons are tougher to handle, as conditions wane and strengthen. Many times, it’s just up to pure luck more than anything.
But if there’s one thing that’s stuck with me in the three years I’ve been (aware of being) disabled, it’s this: don’t be afraid to fire your doctor.
It might seem a bit harsh, but it could save your life.
I was diagnosed by a family medicine doctor after my general care practitioner wasn’t able to see me, after I collapsed at one of my jobs. Because his eyes were fresh to my charts, he was able to piece together all the seemingly inexplicable, “unrelated” issues I’d been experiencing most of my life and diagnose me.
I had a lifelong neurological and dysautonomic condition called POTS. It wasn’t declared until 1997, but my doctor (who I then made GCP) assured me that with the aid of the internet and regular checkups, I could manage it. Sounds simple and relieving, right?
Now, that doctor (like many family medicine doctors) was not a specialist in my field. I was also 24 and scared of being diagnosed with a lifelong disability, latching onto whatever help that strayed across my path or screen gratefully. I was also raised in a family and culture that reveres medicine next to godliness, and tends not to argue with the person whose hands are managing your health.
It wouldn’t be until two and a half years later that I realized that my doctor should have sent me to a POTS specialist. That, at the very least, I should have gone through a tilt table test and nerve testing to discern the level of severity of my POTS. That way, I could be prepared as best as possible for what the rest of my life could bring.
For many with people in their mid-20s with POTS, the condition worsens and doesn’t level out (if it even at all) until you reach your early 30s. That’s a joy I discovered with each passing year. By summer 2016, I was not having it.
Generally, medical systems are maddening because you usually can no longer call a doctor directly, but are sent to a nurse line. Then, you spend days of the telephone game, waiting to get the smallest issues resolved. I like to call these systems “phone jungles,” because you’re more like to die of quicksand or malaria than get a call back sometimes.
One day, I ended up calling the medical line three times in six hours after experiencing excruciating pain for a medical issue I knew I had. I knew the antibiotic I needed, but no one would call me back. By this point, my doctor had already given me his personal cell phone number. This is great temporary fix to the poor system communications should your doctor be an open communicator and fast at problem-solving, but little help when my doctor later wouldn’t text me back or ring in a prescription for weeks.
I started writing on Facebook about all of the struggles I had getting the attention and care level I needed from my doctor. I had suspected I’d had related medical issues to POTS for some four or five years, conditions that my physician had no experience in treating and often disregarded or misdiagnosed.
Several times, I asked him to refer me to a specialist or other physician should he not have the knowledge or expertise in treating me promptly or sufficiently. Several times, he insisted he would get better at communicating and getting me into specialists or treatment centers.
Finally, after eight weeks of my doctor not returning my calls or securing me care I needed, I had a pointless trip to the hospital system emergency room in January 2017. I wasn’t able to get a follow-up visit to my doctor until February. Still, my doctor hadn’t researched specialists and clinics we’d discussed in December.
In fact, I was so little regarded that he forgot entirely about my visit, left me in the waiting room for two hours and finally squeezed me in for a brief, 20-minute chat. During that chat, I told him how much physical pain I had been experiencing. How I could barely move at my parents’ houses during Christmas. How if he didn’t have time to treat his disabled patients, he should transfer care instead of shuffling me into a corner.
He said I had the worst case of POTS than any of the other POTS patients he treated. He seemed concerned, but the visit resulted in no medical action.
For two and a half years, my doctor had told me there were no local POTS specialists, which led me to search for out-of-state physicians and clinics hours away that could help. In fact, there was a local POTS doctor all along at a competing medical system in my city who had been there for a while – my doctor just hadn’t checked.
I wound up needing to go to the emergency room again in February, but this time I took myself to that competing hospital system with the POTS specialist. In the ER, I received tests I’d been trying to obtain for years. Within a week, I was referred to the POTS specialist, an internal medicinist, a rheumatologist, a gastroenterologist specialized in connective tissue disorders and POTS, and other medical professionals.
I called my doctor’s office, and I fired him. I told the former medical system to drop all charges remaining on my account and transferred all my charts.
Looking back, it’s wild to me that I spent two and a half years in unnecessary pain and lack of awareness about what I was physically experiencing and needing. That I put up with that level of medical incompetence that long. I let someone who knew nothing about my condition manage my health because I trusted the idea of the medical system – when the person I should have been trusting more than anyone was myself.
Your body isn’t your car, your computer, your fuse box or your toilet. When those things are broken and the person you call to repair them just isn’t getting the job done, you call another professional. You get another estimate. You watch YouTube tutorials and try to fix it yourself, and sometimes you succeed because you’re the person who knows the problem better than anyone. And sometimes you muck it up, and you sheepishly call that second professional or third professional and so on until someone qualified can help.
We have gotten to the point where we’ve forgotten that the medical industry is still an industry. As with any other business, you need a service and you pay a bill. If the person you hire to fix the problem can’t do so, you find another person.
It’s really that easy. And you don’t have to have a saga of hard feelings, or a trail of frustration and pain like I just outlined to make that choice. Your doctor shouldn’t take it personally if you want a second opinion or to see someone else entirely.
I continue to struggle with this in trying to figuring out some of the stranger parts of what’s physically happening to me, and I know I’m not alone in this. All I have to do is scroll Facebook or Twitter for ten minutes to find crowds of people trying to find out how to break it off with doctors and medical systems that just aren’t that into them, or that they’re just not that into.
A dear friend texted me today while I was mulling over how to write this column. She’s the mother of my “nieces” and “nephew,” the latter having just turned one year old and been diagnosed with Neurofibromatosis Type 1 a little more than a month ago. It’s a frightening and hard thing, to find out this funny, charming little guy you love with your whole heart could have a tough road ahead of him.
With the support of friends and family that insurance wouldn’t provide, he’s now able to get an MRI and start down the line of medical care he’ll need for the rest of his life.
“You know, Emz,” she said, “You’ve been a big player in this – perhaps without knowing it. A few weeks ago you posted an Insta[gram] story saying that you realized that doctors are just like anyone else that you’re paying to do a job, and if they’re not doing the job you need then you need to find new doctors. That has been echoing in my mind for the last few weeks. We had a doctor that wasn’t doing the job we needed – so we began to find new doctors. Thank you so much.”
This isn’t a diatribe against doctors that’s going to end in me nailing my own version of the 95 Theses to the doors of medical centers, outpatient clinics and hospital systems.
I come from a family of medial professionals; my mother is a nurse. Friends on the nursing staff drop by to visit me during inpatient stays. One of my doctors called my mother today to talk about my health and a future referral.
They’re keeping alive, in spite of the roiling political climate and inconsistencies in insurance and coverage. In spite of the fickle and complicated mess that is disability and chronic illness, and a still vastly undiscovered swath of medical knowledge that tech and science hasn’t yet unveiled: I’m still here.
But that won’t stop me from reminding you (and myself) that doctors are just people. They’re not gods, and sometimes they don’t have the answers. Worse, some of them don’t want to take the time to help you find the answer. Some of them won’t have the training to look beyond usual diagnosis or care – and some of them just don’t want to.
So: Get your doctor’s cell phone number, if you can. Find a physician to manage your care who cares about you as a person, who believes you and respects your knowledge of your body’s needs. This should be mandatory for a primary physician who is caring for high-needs patients with disabilities and chronic illness. Your doctor should be the last person to gaslight you about what you’re experiencing.
And if you’re not getting the care you need? Fire your doctor. Really. It’s fine.