One of the most powerful tools we can have for living with migraine disease is one that we develop for ourselves - our migraine voice. Our migraine voice is the voice we use to be our own best advocate.
Why we need to be advocates:
Progress can make life better, but it can also make it more complex. There are several ways in which progress has impacted our health and quality of life:
- Health care: Huge changes have come to pass in our health care system in the name of progress and because the number of health care professionals hasn’t grown as quickly as our population.
- Appointments with out doctors, nurse practitioners, and other health care professionals seem be be scheduled for shorter and shorter lengths of time so they can fit more appointments into their days.
- It often seems that our health care providers are in and out of the room so quickly that we have no opportunity to ask any questions.
- Few health care professionals have or take the time to educate patients about their health issues.
- Insurance companies have become so powerful that they get away with refusing to cover FDA approved treatments such as Botox, which is the ONLY treatment that’s FDA approved for chronic Migraine.
- Insurance companies continue to substitute their judgment for that of our doctors and limit how many doses of migraine abortive triptan medications they’ll cover each month, despite the quantity prescribed by our doctors.
- Information and education: Despite the availability of more information than ever before, misconceptions about migraine persist.
- The abundance of information makes things more complex because outdated and incorrect confuses people and makes it difficult to identify as correct.
- Web sites, eBooks, and other information developed by people who care only about profit - not about patients or accuracy - add further confusion and turmoil.
- Social stigma: Progress has not reduced the social stigma associated with migraine disease.
Purposes of our migraine voice:
Our migraine voice has multiple purposes, including:
- Speaking up and asking our doctors the questions we have.
- Discussing our treatment options with our doctors and expressing our treatment preferences.
- Speaking with confidence and authority when dealing with our insurance companies.
- Politely, yet confidently and firmly expressing any needs we may have for accommodations at work.
- Offering information to family members, friends, coworkers, and others who don’t understand migraine.
- Expressing thanks and appreciation to the people who comprise our support system.
- Supporting everyone with migraine and working to reduce the social stigma associated with it.
Developing our migraine voice:
There are several methods of building our migraine voice into a helpful, reliable, and comfortable tool. They include:
- Continuing to learn about migraine and any other conditions we have.
- Building a cache of educational materials about migraine that we can use to teach others about this disease.
- Taking ownership of our own health and health care. Our health care professionals can only do so much. We’re the ones who live in our bodies and with this disease day in and day out. We must learn to take care of ourselves, any lifestyle changes that can help with our migraine management, and how to work as treatment partners with our doctors.
- Ridding ourselves of old conventions and realizing that it is indeed within our rights to ask our health care professionals questions about our conditions, treatments, testing, etc., and to expect reasonable and respectful answers.
Trusting our migraine voice:
As we develop and utilize our migraine voice to facilitate better health care, educate others, get the most from our insurance company, reduce the social stigma associated with migraine and more, it will respond much as a muscle would respond to use. It will become stronger, more flexible, more resilient, and more effective. It will indeed become one of our most effective tools.
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**Reviewed by David Watson, MD.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.