Medical Gaslighting and Migraine: It’s Not All in Your Head

Written by Jessica Puterbaugh | June 22, 2022

Medical gaslighting happens when healthcare providers dismiss, explain away, or don’t believe a patient’s symptoms. While this can happen to anyone, it’s especially common for women, and those struggling with invisible illnesses like migraine. It’s a dangerous practice that often results in misdiagnosis and/or the inability to receive appropriate and timely treatment and care.

Why does medical gaslighting happen?

Medical gaslighting is very common with diseases like migraine for a host of reasons. There are no specific tests that can diagnose migraine. It won’t show up on an MRI or CT scan. Migraine is a clinical diagnosis, meaning healthcare providers must rely on a patient’s unique pattern of symptoms. Since migraine symptoms vary so much from person to person and attack to attack, this can be very difficult and take a long time, which requires vigilance on both the part of the patient and the doctor. In addition, since head pain and other migraine symptoms are so often also symptoms of other conditions, patients frequently undergo many tests to first rule out other things. All of these factors make it important that doctors take patients seriously. If a doctor dismisses certain symptoms and experiences, and in particular if they minimize the pain and disability caused by migraine, they may be leaving out important pieces of the puzzle or simply not being proactive in treatment.

Because migraine does sometimes respond to healthy lifestyle habits like exercise, diet, sleep and mental health therapies, it’s easy for doctors to point to those factors as the reasons for our symptoms. However, while these healthy habits can help us better manage our stress and overall disease, they are rarely the sole cause of our pain and they are not the actual “cause” of migraine, which is a complex neurological disease. It can be very challenging to get a doctor to see the big picture where migraine is concerned.

These challenges are compounded by an overrun healthcare system and a dearth of qualified headache specialists. Currently, there are less than 1,000 certified headache specialists in the US – that is health care professionals who have added qualifications or certification in headache disorders together with continuing medical education in this disease space. A lack of awareness about migraine and the stigma that it is “just a headache” are also common reasons our symptoms are frequently dismissed. Many general practitioners, hospital staff, gynecologists, and even general neurologists are not well-informed about migraine and the many ways it impacts our lives. Sadly, many have had ZERO hours of education on headache disorders while going through medical school, since it is not currently a requirement in the US to include this in medical education. This quite negatively impacts the quality of care and treatment options available.

Judgment on the part of healthcare professionals

People with migraine often report that doctors don’t take their symptoms seriously. We’re less likely to be given pain medication and often treated with disrespect and disregard. There is a long list of demoralizing comments frequently heard:

  • You’re just looking for drugs
  • You don’t want to feel better
  • You aren’t trying hard enough
  • Your pain is not really that bad
  • You’re overweight
  • You don’t exercise enough
  • You don’t eat a healthy diet
  • You don’t drink enough water
  • Your pain is just in your mind

This list goes on and on. When a person is dismissed by a doctor this way it’s incredibly upsetting and can lead to intense stress, anxiety and depression that can last long after the visit is over. For some it can lead to white coat syndrome, which can have serious consequences in itself. This type of treatment at the hands of healthcare providers makes patients not want to seek further care, leaving them in pain, feeling hopeless and alone.

How to deal with medical gaslighting if it happens to you

Migraine is a complex neurological condition and it’s not just in our heads. If medical gaslighting happens to you, here are some things you can do.

1. Find a certified headache specialist

It’s so important to find a qualified provider who is up to date on migraine and the latest treatments. A doctor who believes you and is willing to partner with you will make all the difference in the quality of the care you receive. This is not always easy, as insurance issues and access to providers pose major challenges. If these issues are barriers to your care, you may benefit from a virtual headache clinical service like Neura Health either for a second opinion, or as your primary headache specialist – use code MIGRAINEM15 to receive a discount at Neura Health. Note also that we will be launching a new tool to find a certified headache specialist by the end of June 2022, so stay tuned for more info on that!

2. Be an empowered patient

Be informed, speak up for yourself and trust your instincts. If something doesn’t feel right, don’t let your doctor tell you otherwise. This may require you to find a new doctor, which can be mentally and physically draining. As frustrating as it may be, it is an important part of managing your condition. Read more about how to become an empowered patient here.

3. Tell your story and raise awareness

The more we speak out about migraine disease and the many ways it impacts our lives, the more we raise awareness and understanding. Some ways you can become a patient advocate include:

  • Attending migraine events
  • Start or join a local support group
  • Share posts and articles about migraine on social media
  • Donate to the cause or help with fundraising
  • Volunteer your time and talents to a migraine organization

Read more about migraine advocacy.

4. Remember that you are not alone

Life with migraine is a difficult journey. Know that you are not alone. Join the Migraine Meanderings and Hope for Migraine social media groups to connect with others who understand what you are going through and where you can find current information, tips about life with migraine, and peer-to-peer support.

Tell us! Have you experienced medical gaslighting? How did you handle it? What did you learn from the experience?

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