Learn how to be your own biggest advocate and how to successfully talk with your doctor about migraine.
Effectively communicating your symptoms and experiences to your doctor is already a challenge, but this is especially the case when you’re experiencing a complex medical disease like migraine. If you’ve felt doubt or pushback about the extent or severity of your symptoms, you may have experienced what’s referred to as medical gaslighting.
Medical gaslighting is when a medical professional minimizes or questions one’s account of their own symptoms or otherwise manipulates a patient’s perspective on their condition. This can take many different forms and may be intentional or unintentional, though the effect on the patient is often the same. Sometimes it may be more general; for example, a doctor may not take a patient’s concerns about their symptoms seriously because of their age, race and/or gender. In other cases, the complex, invisible or difficult-to-explain nature of one’s symptoms may be met with skepticism or not thoroughly considered. For example, in the case of migraine, a doctor may not fully consider the possibility of migraine and instead tell the patient that their headaches are due to anxiety.
Incidents like these can create self-questioning, hesitation to share your symptoms and general distrust in your medical provider. Migraine’s status as an “invisible disease” also plays a part. Due to migraine’s not-so-obvious symptoms, many people—medical professionals and people living with migraine alike—may tend to minimize or dismiss the extent to which one’s symptoms impact their daily lives. As such, it is as important for patients to know how to advocate for themselves as it is for medical professionals to listen to their patients and fully consider their symptoms.
Read on to learn more about how to talk to your doctor about migraine and how to advocate for yourself.
How to Talk to Your Doctor
To start, use AMF’s Find A Doctor tool to search for migraine and headache specialists in your area. Next, ask for references from friends, family or primary care practitioners for trustworthy migraine doctors. Research their background and experiences so that you better understand how they approach their patients’ symptoms and treatment plans.
Once you have a doctor that you find trustworthy, it is important that you keep a record of your migraine symptoms and triggers. This way, you are prepared to discuss with your doctor how your migraine works. Work closely with them on an effective treatment plan based on your symptoms and triggers. Conduct your own research on migraine and bring up any and all questions or concerns you may have to your doctor. Most importantly, be open and honest in your communication with your doctor.
Advocating for Yourself
For migraine patients, many have the fear of being dismissed because of their not-so-obvious symptoms. It is always discouraging when your doctor doesn’t seem to be listening to you or taking your conditions seriously. While hesitation is understandable, being your best advocate is the key to getting the care you need and deserve. It is important to keep going and keep trying. There are several ways to advocate for yourself, as well as resources that will help and support you.
Share Your Story
The stigma surrounding migraine often prevents patients from sharing their personal story. “It’s just a headache” is a familiar phrase for many migraine patients. But sharing your story with others can open up the conversation on migraine and its impact. It can inform both people who live with and without migraine about migraine and its impact. It can also allow fellow migraine patients to feel less alone and isolated. In turn, this builds a community of support and understanding.
Educating Yourself and Others
While sharing your personal story can take down migraine stigma, your story can also be a source of education for others who are unaware of the impact of migraine. It is also important to do your own research on migraine. The American Migraine Foundation (AMF) has a Resource Library of information reviewed by a team of experts. You can read articles on migraine to inform yourself, help to fully understand this disease and learn how to effectively talk about migraine with your doctor.
You can also share your knowledge with others. Whether that is with family, friends or colleagues, sharing your knowledge breaks down the stigma that surrounds migraine. By informing others of facts and research, you’re preventing the spread of misinformation of migraine. You could also help others who may not realize that they themselves have migraine.
Join an Online Community
Migraine affects 1 billion people worldwide. Despite this, it can feel isolating and lonely when you feel like no one understands you. This is where a community comes in—to let you know that you’re not the only one. The AMF has the Move Against Migraine online support group that helps members meet others who live with migraine. Creating a support network can also allow others to check in on you when migraine disrupts your daily life. It also provides the opportunity for us to learn from each other’s experiences and continue spreading the truth about migraine.
Many medical professionals want to help their patients get the best care possible. However, the misconceptions of migraine often cause people to unintentionally dismiss the impact it has. As a result, medical gaslighting can occur. Medical gaslighting can cause damage not only to your diagnosis but also to your relationship with your doctor. A patient-doctor relationship is one built on trust and understanding. It is important that patients know how to be their own best advocate and for doctors to be understanding and compassionate about their patients’ conditions.
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.
Reviewed for accuracy by the American Migraine Foundation’s subject matter experts, headache specialists and medical advisers with deep knowledge and training in headache medicine. Click here to read about our editorial board members.