For people with migraine, technology can be challenging with triggers such as bright screens and moving images. However, one of the greatest benefits of technology is access to information about the disease we live with — information about treatments, attack triggers, disease management and so much more. This information about migraine and other headache disorders is empowering to patients. It transforms lives that have been devastated by a disease for which there is no cure.
Change Is Vitally Needed
In addition to being empowering, information is also invaluable to raise awareness, combat stigma and help create change. There are more than 42 million in the United States living with migraine and less than 1,000 certified headache specialists. This makes readily available, accurate, evidence-based and current information vital. As those of us who live with migraine educate ourselves, we are better able to educate others. This is how change begins. One step at a time. One person at a time.
However, educating ourselves and others can be overwhelming. It can be hard to know where to start.
5 Ways to Educate Yourself
- Advocacy organization websites. Self-advocacy and learning advocacy from organizations’ websites that have current resources provide the opportunity to communicate your needs. Self-advocacy also creates independence and empowers you. Advocacy organizations’ websites with resources include those listed on the CHAMP website.
- Evidence-based websites and articles. The key to initiate a discussion and treatment plan with your health care provider is to be armed with evidence-based research. Evidence-based research has proven theories, management, treatment and outcomes that are peer-reviewed. Examples include: American Headache Society, pharma websites, clinicaltrials.gov and NCBI articles.
- A health care provider who knows how to treat headache disorders. Your health care provider is a valuable member of your team. Those who have a certification in headache medicine have knowledge of current trends and how those trends factor into your specific treatment plan. Your health care provider can combine the art and science of medicine and research. With self-advocacy and empowerment, you may feel more comfortable asking questions and discussing treatment plan options. This shared decision-making is vital to have the best health. It’s a partnership that relies on everyone knowing what is going on and what the options are.
- Conferences and virtual events. Attending conferences and virtual events exposes you to cutting-edge research and management of migraine and headache disorders. They enable you to connect with others who share your diagnosis and learn from renowned headache specialists. Virtual events may lead to virtual support groups. Support groups offer camaraderie and educational opportunities.
- Advocacy videos and social media posts. The Internet has opened a new world for migraine and other headache disorders, as well as patient advocacy. There are advocacy videos sharing the successes and methods of patient advocacy and empowerment. Social media creates an opportunity for your voice to be heard. They also generate ideas and suggestions for treatment and care planning from headache specialists across the world, providing additional information to discuss with your healthcare provider.
5 Ways to Educate Others: Share …
- Advocacy Websites. They are an invaluable resource for your friends, family and colleagues. Include information on frequently asked questions, migraine 101, downloadable documents, blogs, events and more. These are a great place to direct people who want or need to learn the basics about migraine and other headache disorders.
- Your Story. There is nothing more powerful than sharing your story with people who know you. At first, it can be intimidating to do this. Try writing your story in the form of an elevator speech and practicing at home. Focus on the salient points without too much detail. Make sure to include things that will help others empathize!
- A Short Video. Videos are often powerful, to the point and impactful. They also emphasizes that it is not “just you” who is saying this. Choices include patient advocacy videos talking about migraine, videos with headache specialists, animated videos and more!
- Social Media Posts. Most headache disorder advocacy organizations, as well as patient opinion leaders, post on social media regularly. Posts are often easy to share, with or without a comment from you.
- Written Materials. Some of the larger headache advocacy organizations provide written materials. These cover different topics, such as: the basics about migraine, information about cluster headache, treatment options and patient advocacy. These materials are ideal to give to a health care provider who isn’t educated on headache medicine or a colleague at work or even a family member. Some of these resources can be mailed and some are available to download and print.
The above tips are great ways to educate yourself and others about migraine and headache diseases. These tips include three key elements:
- understanding your needs;
- knowing what kind of support may help you; and
- communicating that information to others.
Let us know what you find more challenging: educating yourself or educating others? Do you find it challenging to determine which sources are reliable and current, and which are not? Would you add anything else to the above lists? We’d love to hear from you what works best!
Shoshana Lipson & Kelly Amspacher,
Migraine Meanderings & Hope for Migraine
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