A man looking an a distorted mirror while removing a smiling mask.

Taking Off the Mask: The Real Face of Migraine

Off popped a nail… and then another, leaving my hands looking rather unique and definitely not the class act they’d been intended to mimic! I was traveling back from a pain conference when it happened (fortunately not on the way there, which would have really mucked up my “class act” attempt!). Gazing down at what was the reality of my hands rather than the perfection desired made me realize that this wasn’t too far from my life as a long-time migraine warrior! Maybe it’s like your life too?!

The migraine mask

Honestly, I wear a mask for much of the time. I’ve become much better at taking it off, but still it’s frequently there. Like an essential accessory to my wardrobe that I put on before emerging into the real world. Sometimes even before poking my head out the bedroom door! The mask tells others in society that I’m ok, even when I’m really not. It tells my family not to worry because today’s a good day, even when I could use their help. And it tells me that I am not in pain and can handle anything that comes my way, even when that is patently not the truth!

Pretending to be okay

As my nails popped off that day, with nothing I could do about it, I realized that hiding behind a mask of being “ok” was just like that. I’m still me underneath. I can cover up, often extremely well, but the reality of living with migraine disease has not changed at all. It’s still lurking, like a monster, beneath the mask. It's just waiting for an opportunity to pop out in a way that cannot be ignored, put off, or covered up.

The real face of migraine

While it’s challenging to let others see what migraine is really like, I often wonder how much impact we would have if the mask came off. What would happen if we started to show the real face of migraine? What if it came out of the shadows of our darkened bedrooms and closed blinds? And… what does the “real face of migraine” mean to you? I guess to me it means being willing to let others in. Allowing them to get just a glimpse of the pain and struggle of this disease.

The pain and symptoms of migraine

In reality, the real face of migraine is not pretty. Besides often excruciating pain, it often comes with a wide range of other symptoms such as: nausea, vomiting, light/sound/movement sensitivity, drooping eyes and/or face, slurred speech, dropped words, dizziness, vertigo, shaking, racing heart, uncontrollable yawning, neck pain, visual changes, and much more!

Debilitating migraine

Migraine is frequently an incapacitating whole-body experience. It is both sad and frustrating that we feel a need to try and cover this up because of a lack of understanding, stigma, fear and, yes I’m going to say it – sometimes pride. Personally, I simply don’t want people to see me looking like that, any more than I want them to see me wearing an actual mask to help avoid scent triggers. I prefer to don my virtual mask while hiding the real one!

Ten ways to take off the mask

  1. Saying “no” to things when it’s wiser to rest and explaining why
  2. Being authentic with friends about what would be helpful and why it makes a difference
  3. Putting healthy limits on the things we go to (e.g. leaving early, sitting down rather than standing)
  4. Asking folks not to wear scented products when hanging out with them – yes, it’s ok to ask!
  5. Requesting accommodations at work or at school (preferably in writing!)
  6. Taking abortive or rescue medications as soon as needed, even when out with other people. The longer we wait often the harder it is to treat, and it’s ok for others to know this urgency.
  7. Asking for help getting home during a migraine attack if necessary, or even just asking for a quiet, dark place to lie down.
  8. Not always covering up the pain with layers of makeup (note I said not “always” – there’s a time and a place when we just want to look good, no matter what!)
  9. Being willing to wear a protective mask if it helps with scent triggers, and then being open when asked about it (note: there are some great N99 masks available for every style!)
  10. Being honest with your doctor about the full impact of this disease in your life, and asking about other options so that you can have a multi-disciplinary approach

It's not so simple!

On the face of it, these things look simple, but they are a huge challenge to many of us. Trying to be authentic, set boundaries, or simply ask for help is not always met with a positive response. There is little awareness about what migraine really is, and at least at first, most folks simply don’t understand. There is also a huge amount of stigma in society that makes wearing a mask, most of the time, so very tempting.

Raising awareness of migraine

BUT… like with other diseases that used to be misunderstood, bringing the real face of migraine out of the shadows can be transformative. It can help change not only how it is viewed in general, but also, it is empowering for us. Taking off the mask can raise awareness of the need for overall change – for understanding, effective treatment, education, compassion, and ultimately, for a cure!

Have you tried taking off the mask, and if so, what happened? Are any of those ten options more challenging for you? Do you think it is important to show migraine as it really is? What does the "real face of migraine" mean to you?!

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