I've been told I'm perfectly healthy and left doctors' offices without a clinical diagnosis for a very real medical condition. That's not to say doctors don't know things—of course they do. But this happens. And it's important to be able to advocate for yourself.
When I had late-stage neurological Lyme disease, I knew something was wrong with me but didn’t know what. I traversed the usual avenues in hopes of a diagnosis. Countless doctors told me my symptoms were in my mind and I was depressed or a hypochondriac. It took a $500 appointment with a specialist (not covered by my PPO insurance plan) and a $1,100 lab test (also not reimbursed by my insurance) for me to receive my Lyme disease diagnosis.
By that point, I had been sick for nearly two years. And as wild as that sounds, I was lucky. I had enough money to essentially buy my way to a diagnosis. Millions of other people are not as fortunate on their quests for wellness.
It’s shockingly common for women and people of color to receive substandard medical care. Black women die from pregnancy complications at much higher rates. Trans people face greater barriers to healthcare. And fat patients may receive lower-quality care than their thinner counterparts. If a person falls into more than one of these categories at once, their chances of getting the quality medical care they deserve might plummet even further.
Knowing all this, it’s apparent these groups of people often deal with medical issues on their own for far longer than they otherwise would. The perpetual disregard for the health of trans people, women, people of color, and obese people is damaging and potentially life-threatening. But how can a person go about visiting a Western medicine practitioner and getting the diagnoses they deserve? Forced to figure this out myself when chronically ill, I’ve since worked with others to help them obtain the care they need. Here are my top nine tips.
Know Your Self
The more you know about the ailments commonly affecting people of your age, gender, race, lifestyle habits, and body type, the better. Before scheduling an appointment, do your research. For example, if you’re in your twenties, try looking into issues like endometriosis to see if your symptoms match. If you’re a Black woman, learn about the conditions that disproportionately affect you.
Going to an appointment with education (even top-line internet education) about the health conditions common to your demographics will make it easier to understand your practitioner’s actions and respond to them appropriately. You can even bring notes, such as a list of symptoms and how they do or do not match the ailments your doctor might assume you have based on minimal information.
Know Your Health Plan
Feeling stuck with a doctor who doesn’t believe you is frustrating. Create an online profile on your insurance provider’s website if you haven’t already, and look into your coverage as it relates to practitioner choice. If you have an HMO, research the steps needed to switch primary care providers. If you have a PPO, you have the option of heading straight to a specialist and bypassing a general practitioner who might not be familiar with your current issues. Take that option if it feels like a more streamlined one, provided you are confident you have the right specialist in mind for your symptoms.
Organize Your Symptoms
One thing I learned from having Lyme Disease (which is known as "the great mimicker" because of how many other illnesses its symptoms are similar to) is lengthy lists of symptoms can be difficult to navigate. Narrow down your symptoms to a top ten list, then to a top-five list, and then finalize which is your number one complaint.
When you’ve discerned which reason is making you head to the doctor’s office more than any other, be sure to have researched it well. Know what illnesses cause this symptom, and check your other symptoms against those ailments. While it’s true that many doctors don’t like patients who enter appointments having done research, being equipped with information may make the difference between getting a diagnosis or not.
Do Relevant Screenings First
For every demographic, there are recommended occasional check-ups. If you aren’t current on those, get them out of the way first if possible. It seems nonsensical, but if you haven't had a recent pap smear you may not be able to get the blood tests you want. Make sure to cover the basics.
Request Everything Go in Your Chart
Anything a doctor does goes into your medical chart—but that’s not the case with everything they don’t do. If you have researched your symptoms and have an idea of what diagnostic testing is needed, be clear in your request for that testing. If the practitioner denies it, ask them to note in your chart that they did so. Sometimes, this prompts a doctor to order the testing. That’s because if you go to a second doctor who does order the test, and you then receive a proper diagnosis, the first doctor may appear to have not provided appropriate care.
At your appointment, it may feel embarrassing or intimidating to take notes. It’s wise to do it anyway. Often patients wait for hours to see doctors for just a few minutes, and it can be trying to voice all of your concerns within a small window of time. This is especially true if they don’t believe you’re sick. Keep a record of the appointment in your phone or notebook. You can also ask for permission to record the appointment with an audio device.
Know Your Health Care Rights
It’s far from perfect, but the U.S. healthcare system does provide patients with numerous rights to care. You can read about them in-depth at the Health Consumer Alliance. The more empowered and informed you go into an appointment feeling, the more likely you are to advocate for yourself. And while you shouldn’t have to speak up for yourself to receive proper health care, too often the situation is that you do. So, it’s better to be well-versed in your health care rights.
Request An Addendum To Your Records
You don’t have the right to have information in your medical records changed, but you do have the right to have more added. If you disagreed with a doctor’s feedback, felt ignored when you told your practitioner about your symptoms, or were refused testing, you can ask the office to attach an addendum to your chart about it. The office may have you fill out a form for this. Even if the doctor denies the addendum request, that should still be included in your record.
File A Grievance
If you leave an appointment without resolution, you still have the right to demand the care you need. Filing a grievance with your insurance provider can help you reach a more favorable resolution with the practitioner or put you on the path to better care from another medical professional. In some states, providers must reply to grievances filed within thirty days. You can submit a claim online, over the phone, or in physical writing. Of these choices, over the phone is the least desirable because it’s best to have everything in writing in these situations.
The Bottom Line
The burden of getting proper medical care should never fall on the patient, but with our current system, it too often does. You shouldn’t need these tools, but having them can make the difference between health and sickness. Speak up, know your rights, and do not settle for less than the top-notch healthcare you deserve. Your life may depend on using your voice.
Taylor JK. Structural Racism and Maternal Health Among Black Women. J Law Med Ethics. 2020;48(3):506-517. doi:10.1177/1073110520958875
Phelan SM, Burgess DJ, Yeazel MW, Hellerstedt WL, Griffin JM, van Ryn M. Impact of Weight Bias and Stigma on Quality of Care and Outcomes for Patients With Obesity. Obes Rev. 2015;16(4):319-326. doi:10.1111/obr.12266