How Virtual Communities Are Shaping Migraine Advocacy

Written by Anna Williams | June 1, 2020

Migraine and headache communities have cultivated a safe space in the virtual world. As COVID-19 changed the landscape of the world around us, the headache community maintained its steady pace of providing content to those in need. What has amazed me is how the community has continued to rally with patients. While I have found online communities helpful for many years, I noticed something special about this community. Patient advocacy is the heart of the community.

What Is A Patient Advocate?

Simply put, a patient advocate is someone who comes alongside, speaks up for and works to help the patient voice be heard. Patient advocates organize and rally for policy changes. You will also find them cheering on patients and sitting with them while they grieve for what headache disease rips from them.

  • MOTIVATE: some patient advocates motivate listeners with their speeches and others with their words.
  • CREATIVITY: artists unleash their creativity to bring awareness.
  • ORGANIZATION: organizers orchestrate events and set up informational tables to let patients know how to join the community and special events.
  • SHARING: individuals share their stories and experiences to help others navigate their own waters

How Do Patient Advocates Improve Health Care?

For many years, I would go to the doctor and whatever they prescribed I took without question. If I developed side effects I tried to force myself to “just deal with it”. However, I am learning now that I need to advocate for myself. The doctor-patient relationship is one that needs contribution from both sides. In order to find the right treatment protocols, my feedback and experience is necessary. Virtual communities have become a place where I can talk to others who are in my shoes. I have learned that what works for me may not work for you.

One thing patient advocates do is support the online communities. While some are administrators or moderators of groups, others are active community members. They help patients find the information and support they need. Whether they need ideas on how to share information with their doctor or need help in filing appeals with their insurance companies, these advocates are there to help point patients in the right direction.

How Can I Be Involved?

Patient advocacy is about contributing your time and talent to impact the community. Part of the beauty of how virtual communities are coming together to create a voice is having so many voices! Sharing your story both locally and virtually is a great place to start. From there, it really depends on what you enjoy and what you are able to do. There are many events held to raise awareness as well as funds to help further headache research. While they need organizers, they also need people getting the word out. When you like, share and comment on posts advertising events, it helps those events get more views. That means more exposure, more public awareness, and more hope for change. Being an active member of a virtual community is important.

The Voice of the Community

In community we find we are not alone. When the voice of the community stands together, we can make a difference. Every time you and your doctor decide on a treatment plan that works and insurance denies that treatment, it is important to appeal. Playing an active role in your health care with your doctor and insurance not only helps you receive the care you need but also helps others! When you share your story, others realize they are not alone. Despite the known shortage of certified headache specialists, there are many resources available. Resources that help us better understand headache disorders and treatment options, as well as how to advocate for changes in the healthcare system. Patient advocacy is the heart of the migraine community, and is critical to help others feel supported, raise awareness and bring about change for the future. How might you get involved?

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