Blog #12: Join the Migraine Down Under community

We’re a nice little lot, and we don’t bite. Usually. But if we do, it’s mostly at our family who’ve done something annoying when we have a migraine. We’re nice to newbies.

This year I decided to write a blog. No great surprise there, considering you’re reading this blog right now.

I’d had the idea to start a migraine blog for a while. There are no migraine and headache support organisations in New Zealand and there’s plenty of scope to improve migraine care for Kiwis. I write for a living, albeit probably more coherently than some of my blog posts (the pressure of client money!), so it seemed like a natural way to help. I had lots of ideals when starting the blog and I saw it as a stepping stone to create some action down under.

It took me some time to finally push publish on my website and let the whole world into my little pocket of migraine madness. I’m a relatively private person, not a big personal sharer, and I was also nervous people may not read what I had to say. But thankfully people like you have supported it (you guys rock), and I’ve been lucky to connect with a great bunch of people who are affected by migraine disease, both in New Zealand and overseas.

I was also slightly reluctant as I’m not a big fan of social media. I knew if I wanted to connect with other New Zealanders with migraine disease I would need to create a Facebook page.

I’ve had a Facebook account since 2007 and I used it like everyone else in the beginning to catch up with what friends were doing, especially because I’d recently returned from 4 years overseas. It was great to keep up-to-date with friends overseas but over the years Facebook has lost its appeal.

Side note: To help navigate the perils of Facebook, about 2 years ago I ‘unfollowed’ all of my friends (sorry friends). This doesn’t mean we’re not friends but by unfollowing everyone, when I log onto Facebook my feed only features posts from pages I follow, which are mostly work and interest related.

If I have the urge to see what any of my friends are doing I can still check out their page and have a nosey. Honestly, it’s the best thing I did, and it makes catching up with friends in person so much better because most of the time I have no idea what they’ve been up to!

I’m not great with other social media either. I have my own medical writing business and when I first started freelancing I started an Instagram page to promote my work. But I didn’t keep it up for long. Thankfully, I work with a few lovely clients and get enough work through my business website and other networks that I’ve put Instagram on the back burner. I also have a brief LinkedIn page and I’ve never been anywhere near Twitter.

So, with all this said about social media, it’s slightly ironic I’ve now put myself out there with a personal blog and created a Migraine Down Under Facebook page, and now also a new private Facebook group: New Zealand headache and migraine support group.

I did this to create a migraine and headache community in New Zealand. I belong to overseas migraine pages and forums and although they’re great to belong to, a lot of the questions and information unfortunately isn’t relevant to us Kiwis.

As I’ve said before, I’m working to change the migraine landscape in New Zealand and have been fortunate to connect with some key players and organisations who share a similar vision. While I continue to work on building those networks, I want to help connect Kiwis throughout NZ with headache and migraine.

Don’t let the word ‘support group’ put you off. I considered naming this group New Zealand headache and migraine action, advocacy and support group, to reflect the true aims, but it doesn’t particularly roll off the tongue, does it?

The private group is a place for you if you have migraine disease or other headache conditions. You’re welcome to just lurk if you want and not post anything; just learn from others and hear how we all manage our migraine disease and headache condition. You can send me a request to join on the page.

The group is also where I’ll update about advocacy work and my strategy to improve the migraine landscape. It’s also a place to hear from other people, not just me, ask questions, offer suggestions and jump on board to create some change in New Zealand.

Don’t be shy, come say hi. And like always, you can email me at sarah@sayline.co.nz or join the Migraine Down Under public Facebook page.