Self-Advocacy Tips for Patients of Color

What can you do to be heard? Here are some self-advocacy tips: 

Know Your Body, Know Your Triggers. The first step is understanding your own unique experience with headache or migraine. What are your specific symptoms? When do the attacks tend to occur? Keeping a detailed log, whether through voice notes, an AI assistant, or a traditional migraine journal, can help you identify personal triggers and patterns.

Don’t just tell the provider you have a “headache” – be specific. Describe the location and type of pain, any accompanying nausea or sensitivity to light, and how it compares to your normal baseline. The more detailed you can be, the harder it is for a provider to dismiss your experience.

Stand Up for Yourself. It’s crucial that you don’t simply accept whatever a provider tells you, even if they have impressive credentials. If you feel you’re not being heard or taken seriously, push back. Calmly insist that your pain is real and unacceptable. You can request better care if needed.

Request Documentation of Dismissed Concerns – If your provider downplays your symptoms or dismisses your requests for tests or treatment options, ask them to document in your medical records that you raised the concern and that they chose not to take action. This creates a paper trail that can be useful for second opinions, future care, or advocating for yourself if symptoms worsen.

Keep notes on the date, time, and details of any unsatisfactory interactions. You can file complaints with patient advocates if a provider is consistently dismissive or providing substandard care. If necessary, you can also file a report with the medical board. Don’t be afraid to seek a second opinion or even change providers entirely if needed.

Explore Alternative Treatments. Many healthcare providers might not be well-versed in the full range of migraine and headache treatments. Don’t be afraid to ask about options like nerve stimulators, acupuncture, supplements, or non-pharmaceutical approaches. These can be especially helpful for patients who are sensitive to side effects or want to avoid taking daily pills. Again, be prepared to advocate for the treatments that work best for you, even if they aren’t a provider’s first recommendation. Your health and quality of life should be the top priority. You know your body best.

Navigating the VA System. For veterans, the challenges of accessing proper headache and migraine care can be even more daunting. Female vets of color can face dismissive attitudes by VA staff. It’s critical to be aware of the VA’s Headache Centers of Excellence, specialized clinics that provide comprehensive care. However, getting a referral from your primary care provider can be difficult, as they may not consider your condition severe enough. Persistence is key – keep pushing until you get the care you need and deserve.