One of the most galling things about migraine is how misunderstood it is, despite the fact that it affects over one in 10 people. As we’ve noted in past posts, those with the condition experience a great deal of stigma. They may be viewed as “fakers,” “weak,” or “lazy” because of the debilitating nature of their headaches. Furthermore, those with migraine internalize these attitudes; they start to see themselves as a burden to others and will further withdraw from social and professional obligations.
It’s a vicious cycle, and given that the exact causes and pathways of migraine are still being researched, there’s much work to be done when it comes to dispelling myths and misconceptions. The question is, what can a person with migraine—or someone who has a loved one with it—do to combat these negative perceptions? It’s not easy, but a good way to start is to become proactive about finding and establishing community. Only by being visible, by saying in no uncertain terms, “migraine is a real medical issue that we all must deal with,” will we be able to take on migraine stigma and find the support we need.
Clicking Towards Community
There’s no doubt that the internet can be an excellent tool for finding support and community. Online there’s no shortage of helpful resources for those with migraine and their loved ones. While, of course, it pays to be skeptical when it comes to medical information you find on the web—not everything you’re going to run into there is accurate—what is very helpful are personal blogs and forums for those with this condition. It’s in these spaces that a migraineur or their loved ones encounter people with similar stories and struggles.
What these spaces do is put a human face on the issue: they remind us that, beyond the numbers and the science, these are real people struggle with migraine. As Kerrie Smyres, founder of The Daily Headache (thedailyheadache.com) puts it, “What began as a way to share my experiences quickly became the best job I’ve ever had. I’ve learned so much about migraine, headache disorders and chronic illness, discovered new coping strategies and treatments, and met incredible people.” Clearly, Smyres got a great deal out of this work, and, in the process, she found another means of coping and moving forward.
The focus of her blog, and many others like it, is on the more personal and emotional side of this difficult condition. By going through these experiences, she and other bloggers are able to provide a platform for empathy and understanding. It’s a two-way street: Writers are able to give voice to their own struggles with migraine, and readers are reminded that they’re not alone.
Here’s a here’s a quick but by no means exhaustive list of such blogs:
- Chronic Migraine Warrior (www.chronicmigrainewarrior.com): Jamie Valendy breaks down the daily struggles and triumphs of living with chronic migraine. His is a very personal but compassionate voice.
- My Migraine Life (https://mymigrainelife.wordpress.com): Founder, Sarah, notes: “I focus on being positive. Migraines can be depressing and surrounding myself with a positive support system and mindset helps me enjoy life.”
- Migraine Chick (http://migrainechickie.blogspot.com/): This blog takes a more quirky approach to dealing with migraine and yet still engages directly with the difficulty and struggle of living with it. It’s equal parts harrowing and uplifting.
- Putting Our Heads Together (www.puttingourheadstogether.com): Teri Roberts approaches her website as a means to pool together helpful information about migraine as well as her own personal reflections on living with the condition. Here, you might find quick reviews of books or products, discussion of pertinent issues as well as helpful links to other sources.
There are plenty more; once you start looking for them, you’ll see that there’s a thriving online community for those with migraine. (I should also note that we on this blog are committed to advocating for migraineurs and contributing to this community.)
The Personal is Public
As bloggers like Smyres, Roberts and the others can attest, for migraineurs who are more creatively minded, a platform dedicated to discussing struggles with the condition may help them cope with the condition. It may be worth it to look into contributing to such a space or to starting one yourself. Just the practice of setting down experiences in writing gives a person some level of control over them. In addition, it inspires those with the condition or their loved ones to gain a fuller understanding of what’s happening.
Still, establishing a public forum like this is not for everyone. Not everyone is driven to record and to write the way that Smyres and other bloggers are. Still, there’s certainly therapeutic value in more private forms of expression like keeping journals. Furthermore, you can advocate for migraine in other ways: by speaking about it honestly to family and friends; by supporting the work of likeminded advocates; and by donating and promoting organizations involved in raising awareness and improving care.
If you or a loved one has migraine, there’s no need to feel alone; there’s a vibrant and supportive community out there, ready to help.
- Saper, Joel and Medical Advisory Board Chair. ‘Migraine Facts’. 2016. Accessed December 28, 2016. https://migraineresearchfoundation.org/about-migraine/migraine-facts/.