Your Voice Matters
Living with migraine is hard. For the millions of people who have this neurological disease, there seem to be more obstacles and hardships than can (or should) be managed. Due to this reality, migraine patients are often having to fight for access to treatments, medications and specialists. Oftentimes, their voices are diminished or not heard at all, which is extremely frustrating and disheartening. Advocating for your health can be exhausting when you have migraine, but it is very necessary.
Advocacy includes educating others
Using your pain to empower yourself gives a more positive outlook to living with such a highly stigmatized and debilitating disease. 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.
Champions and advocates
According to Definition.com, the meaning of advocate is "a person who speaks or writes in support or defense of a person, cause, etc." Champion, fighter, crusader, and supporter are some of my favorite synonyms for advocate. A migraine patient advocate is someone who champions and fights for:
- increased awareness
- access to headache specialists
- research funding to better understand pain and discover new modalities of treatment
- 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.
Advocating without even knowing it
Learning to become an advocate isn't hard. You have already done it! 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.
Using pain to raise awareness
Using your pain as an empowerment tool isn't always an easy task when you have chronic pain, especially if it affects you daily. You must find the will to get the smallest things done and sometimes nothing gets done at all. 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, even on the not so good days.
Connecting with others for policy change
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 organizations, like 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. The 50-State Network is an advocacy initiative of the nonprofit organization the Global Healthy Living Foundation. There are currently over 1000 advocates in all 50 states (and Puerto Rico).
With the arrival of new treatments developed for migraine it is even more important now to get involved so we can ensure that insurance companies cover them.
Sharing stories to impact access to treatment
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 for your member of Congress to co-sponsor a bill.
Advocacy organizations 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. Begin your journey to advocacy!
My dark room: