Young, Black, Woman..Sick: 8 ways to be your own medical advocate

I missed a lot of school days during my senior year of high school. I’d started experiencing strange symptoms within my body. Like extreme nausea that could not be quelled with meds, ginger, bread, or the Jamaican cureall: peppermint tea. In addition, stabbing pain would enter my right side and shoot down my leg causing me to limp around. It all seemingly had no trigger and no cure. 

I was young with my whole life ahead of me. I was supposed to be having fun, cheering at football games on Friday nights, searching for a college roommate, and trying on prom dresses. Thankfully I still did all of those things and more. But what was not seen were the car rides laid across the front seat of my then boyfriend’s truck, the requests for extensions on English essays, the days in bed when I should have been in class, and the tears behind my smile.

It’s been 11 years since then. I’ve seen countless gynecologists, rheumatologists, gastroenterologists, neurologists, radiologists, surgeons, physical therapists, pain management specialists and more. I’ve had all kinds of medications and procedures thrown at me, been misdiagnosed, doubted, unbelieved and judged. I was eventually correctly diagnosed with endometriosis and fibromyalgia seven years later in 2020.

As a young, Black woman with two chronic illnesses, I’ve been forced to learn pretty quickly how to advocate for myself with healthcare professionals and navigate the healthcare system. I’ve made mistakes along the way, but with each interaction my confidence and knowledge builds. 

From one patient to another, here are some tips I’ve learned:

1. Track all of your symptoms.

This can be annoying at times, but it will help you be a better self-advocate. I use the notes app on my phone to easily keep track of whatever abnormal symptoms I am experiencing in the moment. This allows me to effectively answer questions like “how long has this been going on?” or “have the symptoms changed any?”. It builds your credibility and demonstrates to doctors that you are serious about your health and expect them to be the same. It also helps build your confidence and understanding of your own body.

2. Be overly prepared for appointments.

Come to every doctor’s appointment with notes (symptom tracker), questions, and sometimes even tests you’d like to request. Also, be prepared to take notes during the appointment, and do not stop taking notes even if the doctor comments that “this will all be in your chart.”

3. If you’re refused a test, ask for it to be noted in your chart.

There have been times when I’ve requested a test, whether that is a CT scan or blood wook, and have been told no by the doctor. Whenever this happens, I request for it to be noted in my chart that the doctor refused said test. This usually results in them deciding to do the test or at least it being documented in my medical history.

4. Ask for time to think about suggested treatments or medications.

Don’t be bullied into trying a medication or treatment you’re unsure about. Ask for a few days to think about it, do your own research, and follow up with your decision. Most doctors have no problem with this, but few offer it up front. 

5. Ask to discuss all known side effects of prescribed medication.

Most doctors will mention some side effects when they prescribe or recommend a new medication, but very few take the time to discuss all of them and how they may affect your body. Ask them to go over all known side effects and ask again at the pharmacy when you pick up the medicine. You can also request samples from your doctor’s office.

6. Always read your visit summary.

All healthcare facilities should provide you with a visit summary after each appointment. These can mostly be found in an online patient portal or can even be printed off for you. Take the time to read the summary as soon as it’s available. Oftentime doctors include comments that they did not mention during the appointment or even misrepresent your own comments. Don’t be afraid to contact the healthcare facility if you notice an inaccuracy or have a question.

7. Bring a trusted male companion to your appointment.

This one may be a little controversial or hard to reconcile. However, there have been many stories of women who’ve had wildly different experiences when they’ve brought a male partner, dad, friend, etc. to an appointment with them versus when they go alone. Something about the male presence causes doctors to take women more seriously. I know, I know… why can’t they just believe us as the experts of our own body? I feel the same way! But when you’re desperate enough, you’ll do whatever it takes for answers and help. Prior to your appointment, make sure to have a discussion about  the level of involvement you expect from your male companion during the appointment.

8. If you have a bad experience, report it.

I spent too many years trying to give doctors the benefit of the doubt and brushing away bad experiences as me just overreacting. But I very rarely was. There are a few different ways to report a healthcare professional if you believe you were mistreated in any way. The best ways are to speak with the facility’s Patient Advocacy department or request a call with the department Operations Director or equivalent. Be sure to ask for a copy of the filed report. If you’re too overwhelmed, you can also request a loved one to file a report or complaint for you. Filing a claim may seem like too much of a hassle, but you’re not only protecting yourself but any future patients from experiencing the same mistreatment. Do it for every other Black woman trying to navigate the healthcare system as a too often unbelieved, doubted, judged minority.

Navigating the healthcare system is tough, and being a Black woman unfortunately adds an extra layer of difficulty – the stats don’t lie. So whether you have a chronic illness, are seeking answers to new symptoms, or just need a routine checkup, be sure to keep these eight tips in mind.