An advocate can be defined as a person who publicly supports or recommends a particular cause or policy. Some of my favorite synonyms for advocate are champion, fighter, crusader, and supporter. My definition of a migraine patient advocate is someone who champions and fights for: awareness, access to headache specialists, increased research funding to better understand pain and discover new modalities of treatment. An advocate supports the migraine community through the sharing of his or her experiences and providing a voice to those who feel like theirs doesn’t exist.
You may not realize it, but you already are one! Anyone who lives with a chronic illness is an advocate on some level. If you take charge of your health, research treatment options, ask your healthcare team questions or learn as much as you can about your disease or condition you are an advocate. You have empowered yourself to do everything you can to get better and have a better quality of life. You are a rockstar!
Using your pain to empower yourself makes living with such a highly stigmatized and debilitating disease a more positive experience. Becoming well-versed about migraine and speaking about how it truly impacts all aspects of life helps to educate others and breakdown the misconceptions about migraine disease. Learning and believing that you are not your pain and that you deserve better access to healthcare and treatments can lead you onto a journey of advocacy.
Turning your pain into empowerment is not an easy thing to do all the time. Those of us living with chronic pain, sometimes daily, must find the will to push through to get things done.
What I have found through becoming a patient advocate is that my pain has a purpose.
I use it as a platform to educate and raise awareness about migraine disease. It has elevated my voice so that I can speak for the millions who suffer in silence. You have the power within you to do the same.
If you are frustrated with the lack of treatments for migraine, the scarcity of headache specialists, and the under-funding of migraine and headache specific research you can channel that into advocacy work. Becoming involved with the 50-State Network provides you with the access to reach out on the state-level to change policies and practices that adversely affect people with migraine disease.
Patient stories drive change. Sharing how important it is to have access to new medications can be the change needed to get insurers to pay for them. Relaying the adverse outcomes of being put on a step therapy plan can push forward new legislation to get rid of or override fail first policies. Explaining how the lack of funding for migraine research leaves you with a small pool of treatment options, most of which are off-label drugs, can be what it takes your member of Congress to co-sponsor a bill.
The 50-State Network can help amplify your voice to affect the change that you need to see. Every person living with migraine disease has a story that deserves to be told and heard. We want to encourage, empower and support every one of those stories. Join us today and begin your journey to advocacy!
About the author: Jaime is the migraine patient advocacy coordinator for our 50-State Network. Jaime was diagnosed with migraine at 8 years old and chronic migraine at 27, living with the disabling illness for 37 years. Advocating for headache disorders and mental health are her passions.