Something I don’t often talk about is my struggle with migraines. Now, let’s get this out of the way. When I say ‘migraines’ I’m not simply talking about ‘headaches,’ I’m talking about loss of vision, debilitating pain, delusion, numbness, and vomiting. Migraines have impacted every part of my life at some point or other, and since June is Migraine Awareness Month I figured it’d be the best time to feature a post on the importance of advocating for migraine awareness, and how you can do so. As part of my job, I work with a great company called NewLifeOutlook. NewLifeOutlook provides resources, information, a supportive community and a safe place for people in similar situations to come together. As the Community Manager for NewLifeOutlook, I have the opportunity to interact with a variety of people with a variety of chronic conditions – migraine being one of them. If it isn’t obvious by this point, migraines (the topic, not them, themselves because ew.) is pretty near and dear to my heart. Now, on to the post!
Becoming a Migraine Advocate
A couple of years ago I became a migraine and headache advocate. The definition of “advocate” may be different for everyone, but it’s less complicated than it seems. Simply put, being an advocate means learning and teaching as much as you can about migraine.
Using Social Media
Social media is such a powerful tool to spread awareness. The first thing I did when I became an advocate was to follow fellow advocates.
Surrounding your feed with knowledgeable people, foundations and medical websites can teach you so much about others and yourself. I found the information to be eye opening and was reminded to take a more active role in my health.
Once I became more knowledgeable about migraine topics, I had better ideas on how to help myself. By reading a lot I was able to make connections with my health and formulate quality questions for my doctor.
If you’d like an advocate to follow, you can start with me. I am a mother of two small children, a wife, and a chronic migraine sufferer. I tell stories about how I suffer, how it affects my life, and how I try to feel better in whatever way I can.
I don’t rely on medication alone and try to live a well-rounded, positive life. I have suffered since I was five and understand that my disease is a marathon, not a sprint. There is no cure and I advocate for others to understand and stop the judgement of invisible illnesses.
Make connections with the people you follow or in migraine groups. Person to person connections can give you a sense of community, which can help with depression, anxiety, pain, relationships and other issues that arise with migraine.
Sometimes people in your life may not understand your disease as much as a fellow sufferer might. Knowing I’m not alone empowered me to fight in new ways.
Share the information you get from those connections. Talk about migraine, share information, articles, and reduce stigma on your feed.
By sharing information, more people see migraine topics, learn, and continue to follow. By spreading migraine awareness, someone can be helped or help someone they know who suffers. You never know who is reading, so pass along whatever insight you can.
When I started advocating, my friends had a better understanding of my “headaches” and saw a clearer vision of what migraine is. It’s more than a headache, so explaining it to others will reduce stigma, and help them to know how to help someone with a migraine.
I also found that I made new connections with people I was friends with and didn’t know suffered as I do. I was able to bond in a new way with these friends and make new relationships.
June is migraine and headache awareness month. Just by changing your profile picture to a migraine picture will make you an advocate.
Purple is the dedicated migraine color; I wear purple in hopes that someone will ask me and I will get a chance to talk about migraine. I have t-shirts and bracelets for migraine awareness, stigma and how to help.
Just by wearing migraine awareness gear you are a walking advertisement for migraine.
I support a variety of charities. As I was doing a walk for one of them, I thought, what about my cause? I have never been part of a migraine walk and have found it difficult to find a place to donate to.
After doing some research, I have now participated in many migraine fundraisers to benefit a variety of causes. Here are a few I love:
- Migraine Research Foundation. The MRF raises money for grants that support migraine cause, treatment, and cure research.
- American Headache and Migraine Association. AHMA educates, supports, and advocates for people with migraine in order to eliminate stigma.
- Miles for Migraines. This organization holds a 5k, 10k, and 2k walk, and works on programs for people with migraine.
These are all great opportunities to donate for research, empower yourself as a patient and get walking for a cause.
Every day that I advocate I feel like I’m helping. I’m helping myself by being more knowledgeable, helping my doctor and friends have a clearer vision of how to help me, and helping others by teaching and supporting them.
How do you advocate for migraine or headache disorders?
Sarah has been cursed with chronic migraines since she was 5 years old. She tries to find balance, answers and hope in a world filled with lots of pain and setbacks.