In college, a friend of mine had terrible headaches. She spent days at a time locked in her dorm room, head under a blanket, wearing large headphones to block out all sight and sound. She came to lectures with thick sunglasses and earplugs to manage the pain a bit more. In conversations, she was never really present. She often looked through you instead of looking at you.
After months of this, she went to the campus nurse, who told her she was dehydrated and sleep-deprived. She stopped consuming caffeine and left every social event early to make sure she would get a full nine hours of sleep. The headaches kept coming. Eventually, she went to an urgent care clinic, which advised her the same thing as the campus nurse, but referred her to a primary care doctor if the headaches didn’t stop. Finally, after a month of waiting, she got an appointment with a doctor, who told my friend she had stress-induced migraines. “Common for students,” the doctor told her, “I’ll prescribe you anti-anxiety medicine. That should help.”
It did not help.
That started a years-long journey of my friend trying and failing to receive help for her migraines. She went to multiple doctors, each giving a different diagnosis. She tried over-the-counter medicines, home remedies, and holistic medicine practices. Nothing worked. This went on until she found a new doctor who actually listened to her. She told the doctor about her symptoms, how she had had these headaches for years, and nothing ever seemed to make them better. She gave this doctor a full medical history of every diagnosis she was given and every treatment plan she tried. The doctor ordered an MRI.
She had a microadenoma. A small brain tumor. It was non-cancerous, and if you are going to have a brain tumor, the one you want to have. She would be fine with medication and yearly monitoring. Finally, she was migraine-free.
Obviously, this is an extreme case. Most people with headaches don’t have brain tumors. However, it highlights a common problem for many: being disregarded when needing medical care. This is why self-advocacy is vital.
What is Self-Advocacy?
Self-advocacy means taking an active role in your healthcare by speaking up, asking questions, and sharing accurate information about your health. For individuals from marginalized groups, it is sometimes the only way to get the right care. A survey in 2021 from the California Health Care Foundation found that 1 out of 3 Black Americans reported being treated unfairly in the medical system. This number was higher for Black individuals with a disability or who identified as LGBTQ+. In the same year, The Permanente Journal interviewed women about their experiences in the medical system. 73% of women interviewed reported being dismissed or unheard during medical appointments.
Self-advocacy helps many people receive more accurate diagnoses, reduce medical misunderstandings, understand treatment plans more clearly, and feel more confident about healthcare decisions. Ultimately, advocacy helps make sure your care reflects your needs and personal wishes.
How to Advocate for Yourself in a Medical Appointment
Self-advocacy starts before you even get to a medical appointment:
Keep a symptom record: Write down every symptom you experience and how long it has been happening.
Prepare questions: Think about what you want to ask the doctor when you are at the appointment.
List your medicines and supplements: Let them know everything you take and why.
Note your medical history: Surgeries, treatments, allergies, and diagnoses are all important.
At your appointment come prepared with this information written down so you do not forget.
During the appointment:
Bring a support person: Find someone who knows about your health who can speak up for you if you cannot.
Be honest and direct: Use clear communication to describe your symptoms and don’t minimize your concerns. Be honest with your healthcare professional so they know the best way to support you.
Ask for plain language: Medical speak can be confusing. Ask the provider to explain more clearly.
Confirm what you heard: Repeat back the information given to you to prevent misunderstandings.
Sometimes, even with self-advocacy, your concerns may go unheard. If this happens, request another provider or get a second opinion. You don’t have to agree to treatment you don’t understand.
Tools That Can Help
There are many tools that might help your self-advocacy at your next medical appointment.
Symptom trackers
Medication reminders
Personal health record files
Patient portal for accessing test results and visit summaries
Although it can be hard, self-advocacy is an important step in receiving proper medical care. Your symptoms, experiences, and concerns are all vital parts of your healthcare. Your voice matters, especially in regards to your health. You should be heard, respected, and empowered in every step of your healthcare.
If you have questions about patient rights or tools to support advocating for your health needs, call JABA’s Helpline at 434-817-5244.
Ty Mynes is a writer and Communications Specialist at JABA.
