Help Raise Awareness – Participate in the Migraine Behind the Mask Project

Written by Shoshana Lipson | April 21, 2023

Can I Be Honest About Migraine?

For those who have never lived through a debilitating migraine attack it can be challenging to truly understand everything that goes along with migraine disease. Many still find the concept that migraine is more than just a simple headache hard to believe. Sadly, stigma against those who live with migraine is alive, well, and rampant through all aspects of society. As someone who has lived with migraine since early childhood, and as a patient advocate, I still struggle to find ways to adequately communicate about life with migraine. Sadly, many times I still put on a “mask” to try and cover it up.

However, I know that my voice can make a difference, and so I refuse to give up trying. In fact… each and everyone of our voices can make a difference! As we make the conscious decision to take the mask off our lives with migraine, awareness will increase and stigma decrease. That is the concept behind the impactful Migraine Behind the Mask project that we launch every year during Migraine and Headache Awareness Month in June.

Why Should I Be Honest About Migraine?

The reality is that revealing the true devastation of migraine disease can be really challenging. During attacks we want nothing more than to hide away in a dark, quiet place alone. No one with a full blown migraine wants to be seen, let alone share what it’s like or have a photo taken.  Inbetween attacks we do our best to forget what the last one was like, and we live in constant anxiety that we won’t be believed because we “look fine.” Add to that the frequent doctor visits, fighting with insurance to get treatments approved, and dealing with comorbid conditions… who has the energy?!

However, taking the mask off, and sharing what migraine is like, can be incredibly empowering for people. Migraine takes so much control away from our lives that discovering something we CAN control is transformative and empowering! We CAN make the decision to make a difference – and not only for our own lives. Speaking up, sharing our stories, and taking off the mask, impacts everyone else with migraine too – for the better!

Not only that, but continually hiding the pain is utterly exhausting and demoralizing. Imagine the freedom that comes from being honest… finally! From realizing that we have more to lose by hiding than by being real. By being ambassadors of information, and showing what it’s really like to live with migraine “behind the mask.”

How Can I Participate in Migraine Behind the Mask?

Starting on June 1, as part of our Empowering Patient Voices project, Migraine Meanderings will be sharing a series of social media posts highlighting the devastation of migraine and other headache disorders. Posts will be shared every day in June, and weekly thereafter until we have posted all the submissions. CLICK HERE to see previous posts. In addition, a selection of submissions will be included in our annual Migraine Behind the Mask video. CLICK HERE to see the last three videos for this project. If you live with migraine, we invite you to take off the mask and help us raise awareness! Here is how YOU can participate and make a difference:

  1. Photograph: Choose a photograph of yourself EITHER when you are feeling well/active OR when you are having an attack/treatment.
  2. Quote: Come up with an original quote that is something you want other people to know about migraine (maximum 15 words long)
  3. Send In: Email the photo and the quote to ASAP – deadline is April 30! Note: you can also send the photo and quote to Shoshana Lipson on Facebook Messenger if that is easier, and please make sure to include your email address.
  4. Consent: Check your email for a photo consent form, giving us permission to use your photograph on our website, social media channels, video, and other forms of media.

We are incredibly grateful to our generous sponsors for making this project possible, and for partnering with us to make a difference. Now it is our hope that YOU TOO will stand with us this June, and allow the world a glimpse behind the mask. As we speak out, and continue to raise awareness, we help bring about change. Each of us becomes a small ripple that can then join together to become a tidal wave. And that wave brings with it empowerment, understanding, and hope for the future. We hope that you will be a part of that!

Let Us Know

Do you find that you hide your migraine behind a mask? Is it challenging for you to share the reality of this disease in your life? If you share about migraine with others, what has that been like for you?

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