Chronically ill or medically complex patients face all kinds of discrimination and uncooperative attitudes from our medical system. This especially goes for women, queer individuals, and BIPOC, who deal with institutional oppression, gaslighting, and medical bias that ranges from infuriating to deadly.
If you’re just starting out on the journey of being chronically ill or managing a disability, it can be incredibly daunting and demoralizing to see how uncooperative medical systems are. I’ve been on this journey for a long time. It started in earnest when I was around 11 years old. I began struggling with intense dysautonomia symptoms — and the first doctor to see me accused me of faking. I’ve had emergency room doctors have to Google my conditions after stepping out of the room. I’ve had plenty of trials and tribulations and I know that the medical system as a whole is difficult to navigate. But in all of this time, I’ve learned a few tricks about how to survive and advocate for myself as a chronically ill person.
1. Have your doctor document disagreements or refusals on your chart.
This is a commonly-referenced hack for chronically ill people, and for good reason. It works. The simple premise is that doctors will frequently choose to order an extra test (within reason) if they weigh the risk of being wrong later on and having that called out in writing.
So, if you’re seeking an additional diagnosis or pushing for blood work, a test, or a referral and your doctor declines, ask them to note their rejection in your chart. You don’t have to explain why, though if you’re inclined, you can tell them that you prefer to keep a solid record of your treatment plan, including documenting disagreements on your case. After all, documenting in general is your friend as a medically complex chronically ill person. My favorite doctors and nurses tend to be the ones who take really extensive notes.
There are two things that can happen here: one, it usually gives doctors enough pause that they’ll end up relenting and ordering your test or giving you the referral you asked for. Two, if and when your symptoms don’t improve, you’ll have it documented in writing that you asked already and the problem didn’t resolve without further intervention. That can make that doctor more cooperative the second time around or alternatively increase the chances you’ll be taken seriously while getting a second opinion. It bolsters your legitimacy and creates a strong paper trail.
2. Identify a grab-bag of “Plan B’s” and “tolerable leverage” for urgent situations.
There are some issues that you can’t just wait around for test results on. What happens if you’re getting treatment for something already and a doctor is being uncooperative about your care? This could present in a variety of ways, like doctors not wanting to do IV fluids for dysautonomia patients or refusing to prescribe pain medication to patients in emergency rooms. Too often, chronically ill patients get referred to in derogatory ways — “frequent fliers” — and categorized as drug-seeking in the ER, which can make your doctor biased against your case before they even walk into the room.
I’ve learned that having a grab-bag of Plan B’s for recurring issues can be helpful. For example, I know that if an ER doctor is unfamiliar with my Complex Regional Pain Syndrome and hedges about giving me narcotics first, I ask them for Torodol — a non-narcotic anti-inflammatory painkiller. Does it help to the extent that I need it to during a pain crisis? No, definitely not. But it shows that I’m willing to play ball as a patient. It reassures the doctor that I’m open to trying other things. I frame it as that, too. “OK, then can we try doing Torodol, see if that helps the symptoms, and check back in an hour?” Usually, after seeing that other pain meds indeed don’t relieve my symptoms or bring my blood pressure down, doctors reassess.
Tactics like this also reinforce the ideal dynamic that you’re looking to cultivate with medical professionals, which is more of a collaborative relationship than a black-and-white power dynamic. You should feel like a partner in your treatment. It shouldn’t just be thrown at you. Remind doctors that it is your body and you are the expert on it by having tolerable leverage to work with.
To be clear, you shouldn’t have to come to your medical appointments, especially emergency ones, gaming out leverage like you’re entering a high-stakes negotiating table. You should just be able to get care sans the medical gaslighting, but too often, that’s not what happens on the ground. Being prepared for that can help empower you in the moment.
3. Identify a doctor on your care team who can vouch for you — and don’t be afraid to ask.
It is a full-time job to manage chronic illness. Between all of the specialists, appointments, and insurance nightmares, it can be a chaotic and disorienting mess. Even if you prepare yourself, educate yourself, and learn to advocate for yourself, it’s a lot to put on your shoulders exclusively. This is why you should absolutely seek out a central doctor on your team who does understand your situation and does have an established relationship with you, and then have them serve as a central contact point for any other troublesome doctors.
Maybe your primary care doesn’t seem to really “get” your whole situation, but your cardiologist does. You can and should ask your cardiologist to talk to your primary! If you’re seeing doctors that aren’t part of the same medical system, you might have to sign additional paperwork to allow them to communicate, but it’s well worth it to take the burden off your shoulders. When a doctor advocates on your behalf, it comes with a lot of extra weight for other medical professionals.
Having a doctor who is willing to talk to the rest of your team when you need it can make a huge, vital difference in you getting the care you need. Don’t expect your doctors to necessarily propose this themselves — ask them! If you are having trouble with another specialist and you have a trusted doctor who could fill in the blanks for them, it is within their job descriptions and duties to help facilitate that communication. You can ask upfront if they would be willing to talk to your other doctors if you have trouble, or you can ask them spontaneously, even if you’ve been seeing them for a while and haven’t done so before. You aren’t bothering them by asking them to help you get the care you need — it’s what they’re there for.