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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!

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.

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!

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 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 to many of us they are a huge challenge. 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 also is a huge amount of stigma in society that makes wearing a mask most of the time so very tempting.

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?!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Joleen1966
    1 week ago

    I don’t call it wearing a mask but putting on a “good” face. Those close to me know I am quite an actress. They can tell by looking at me and know how bad the chronic migraine is getting. Scents don’t bother me too much other than diesel fumes and lilac. I’m lucky that way. I do say NO when I have to. It’s not always easy to do but it’s necessary. My neuro is a non-listening guy but my PCP is wonderful. We’re sticking with the neuro to try new meds… currently on Emgality with no relief but it’s only been 3 months. I’ve been on everything else you can list! My cousin gets migraines and acupuncture has helped. I may try that. Can’t be worse than the 20+ Botox shots in the face.

    Try to keep looking up and sometimes take baby steps. Just trying to survive somedays is difficult. I am chronic so don’t remember a day when I didn’t have a migraine. Getting out of bed is a bonus, getting ready for work is great, working is fabulous!!!!

  • glassmind
    2 weeks ago

    #6 because a)having only so mamy doses b)being in a location where side effects will be dangerous or c) being tired of medication side effects in general. Sometimes, I do decide to just lie down and suffer rather then take medication.

    Alas.

    Otherwise, I’m usually “mask-free” while experiencing an attack. But between attacks, I need that mask. I need to see myself as someone beyond migraine. Like a superhero costume. I feel empowered by the mask. And, I also am reassured by the mask. If I am well enough to put on and maintain that mask, then I know I am doing pretty well. Because when I am most unwell, then the mask maintenance is just impossible.

    We do need to be honest with ourselves, our doctors, our loved ones and even strangers. Sometimes, for me, that honesty is, “Yes, I look fine. Because, I work very hard to look fine. I need the dignity and hope that comes with the mask.”

    Thank you for bringing awareness to the myriad struggles that come with Migraine.

  • Peggy Artman moderator
    2 weeks ago

    @glassmind,
    I totally agree!
    Peggy (Migraine.com)

  • glassmind
    2 weeks ago

    All so very true. And all ten optiins are good. I struggle most with #3 and #6.

    #3 because, dang it sometimes I just want to enjoy life or because something really has to be done. But I do need to just abort whatever I am doing when a migraine strikes if at all possible. Often home alone when one hits, though, there are things I have to do. Some to help with the migraine like close the blinds even though walking around to do so is painful. Others because I have pets. They have to eat and have cleanliness even if a migraine is vicious.

    #6

  • Peggy Artman moderator
    2 weeks ago

    @glassmind, it’s good to hear from you again. I also have trouble with #3 and #6. But I’ve learned that if I don’t pace myself through a day, I’m worse off the next day. I also have trouble knowing when to take an abortive medication because I only get a certain amount each month. I hope your day was as pain free as possible.
    ~ Peggy (Migraine.com team)

  • glassmind
    2 weeks ago

    Thanks. I’m mid migraine attack now, but with meds I’m down to a 7 pain and a 3 nausea. Yea! Lol

    Lookinfvat a device exaccerbates the pain, but sitting in the dark (lying worsens vertigo), in too much pain to sleep despite sedative medication side effects, is too depressing. Coming to this community helps drive away hoplessness and depression. Thanks again for your well wishes.

    Hugs

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