The Mindful Migraine

Since starting my Mindful Migraine Blog in mid-January of this year, I have spent as much time (if not more) reading other people’s blogs as I have writing on my own.  As part of those “travels” to other places near and far I have met many, many wonderful people (chances are you’re one of them!) 

After perhaps three months moving around Blog-land, I branched out to social media and LinkedIn to see who else I could meet.  To my delight, I crossed digital paths with Ellen Terwindt from the Netherlands.  One of my favorite things I read on one of her posts was this:

Wisdom from her grandmother: “Child, you suffer the most, from the suffering you fear.”

Now, I’ve mentioned before in my Chronically Empowered podcast interview hosted by Roi Shternin – I used to think of myself as a Healthcare Loser (someone who knows nothing about their medical condition or treatment options), who transformed herself into a Healthcare Learner (through a self-directed holistic healing journey).  The end of that “spectrum” if you like, is Healthcare Leader (I’m not there yet)… but Ellen is!  By her own definition, she went “from migraine sufferer to migraine leader”.

And what did she do with her newfound leadership energy?  She made it her mission to help other people who struggle with migraines learn about their condition, and to do this, she and her two colleagues founded Studio Migraine.

[Image source: LinkedIn – that’s Ellen in the middle!]

If you have a QR code reader, this will send you over to Instagram which includes a migraine visual aura filter they created – you can see how it works when I took a selfie (spookily – it closed my eyelid!):

MOST exiting of all – Studio Migraine launched a podcast on the 12^th – and I have it on good authority that at sometime in the future there will be episodes in English, for those of you (like me) who are not bilingual!

Here are the links:

Main website: Studio Migraine (studio-migraine.nl)

Instagram: Studio Migraine (@studiomigraine)

LinkedIn: Studio Migraine: Overview

I have a bit of a fan-crush on Ellen (she’s pretty amazing) so it’s an absolute honor to include some of her words of wisdom (translated) here for you to read:

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Welcome to Studio Migraine, where we understand that migraine is more than just a throbbing head. We wish it were that simple! Living with migraine is a challenge, let alone talking about it, especially considering that it’s often dismissed as just a severe headache, and there’s a lot of stigma surrounding this condition: “Are you sick again? Oh, just a little headache, well, sorry, but it’s your own fault because you’re too busy…”. But as we know, migraine is so much more than just ‘a severe headache’, and it’s not our fault that we were born with this impactful brain disease.

Let’s look at the facts: In the Netherlands, an estimated 2.5 million people suffer from migraine, of which over 1.88 million are women (it occurs three times more often in women than in men). Migraine is most common among women aged between 30-60 years (which does not mean that women under 30 or over 60 no longer experience migraine!). According to the Global Burden of Disease Study, migraine ranks second among the most disabling diseases for women under 50 years of age. Anxiety and depression are more common in people with migraine. Hormonal fluctuations have a proven impact on the severity and frequency of migraine. And so little is spoken about all of this….

As migraine sufferers, we tend to hide when we have a migraine and prefer not to talk about it too much. This is due to fear of our own inner voices (self-stigma) or the stigma from others. It seems that even visiting a doctor is a barrier for some of us, as only 11% of all people with migraine are known to their GP as having the condition.

As experienced individuals, we know how difficult it is to start the conversation about migraine. It feels like a hurdle you have to overcome, especially when the migraine becomes too severe and/or occurs too frequently. A casual remark at the end of a conversation with your manager that “you sometimes have a migraine” is just the beginning of a long process of openness and understanding.

But at Studio Migraine, we also believe in the power of knowledge. The more people know about what migraine truly entails and its impact on us, the better. That’s why we’ve started sharing our experiences and expert knowledge. And we see that it works. The more people understand what migraine is, the easier it becomes to talk about it and find support in your environment. Studio Migraine also aims to empower women to gain more control over managing migraine. We are here for migraine sufferers and migraine leaders, for all women who are in the prime of their lives, trying to juggle everything: work, perhaps a family, a social life, being a good partner, caregiving, and much more….

Let’s not forget: migraine is a complex brain disease that you are born with. Migraine has different phases, from warning signs (prodrome) to the attack itself and the recovery afterward (postdrome). It is a rollercoaster of emotions and symptoms that can keep you stuck for days, and where you can roll from one attack into another. Only together can we break the stigma surrounding migraine and create more understanding and support.

So let’s keep talking about migraine, let’s keep sharing, and let’s be mindful of ourselves as migraine sufferers and continue the conversation with those around us. Together, we can make a difference.

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Hooray for the advocates like Ellen who are helping the rest of us heal – we are super grateful!

Take care taking care everyone, Linda x