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6 Things No One Talks About When It Comes to Chronic Migraine

Real Talk

April 10, 2024

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Photography by Hugo Fuentes/Stocksy United

Photography by Hugo Fuentes/Stocksy United

by Amy Mowbray

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Medically Reviewed by:

Heidi Moawad, M.D.

•••••

by Amy Mowbray

•••••

Medically Reviewed by:

Heidi Moawad, M.D.

•••••

Migraine comes with invisible symptoms and invisible feelings and worries. Here are six things migraineurs deal with that no one talks about, plus how community helps.

Navigating life with chronic migraine can be incredibly hard. There are so many aspects that people without migraine don’t understand.

The more we speak openly about how chronic migraine affects us, the easier it is to reduce the stigma and break down the taboos.

Here are six things that nobody talks about when it comes to chronic migraine.

Join the free Migraine community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

1. How hard it is to answer “How are you?”

“How are you?” is a question so many of us living with chronic migraine dread. Of course, we want people to care and show interest in how we’re doing, but it can feel like an impossible question to answer.

If we answer honestly and tell someone we’re having a terrible week and have been in bed with back-to-back migraine attacks, we may feel bad about making them feel uncomfortable.

If we say we’re OK when we’re not, we minimize our pain and symptoms and further add to the invisibility of migraine. The other difficulty with this question is that many of us with chronic migraine find it hard to separate how we’re doing from how our migraine is doing.

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2. Worrying about posting good days on social media

Most of us understand that social media is a carefully curated highlight reel of people’s lives. Still, it can still feel incredibly daunting to post your good days online when living with chronic migraine.

There’s already so much misunderstanding and stigma around migraine. We may fear that people will get the wrong idea if we post a picture of ourselves out of the house and smiling. We may worry that people will assume we were faking it or making an excuse.

The reality is that a photo is a tiny snapshot in time. It doesn’t reflect the bigger picture.

We might be having a good day or week, but we might also just be pushing through pain and symptoms, trying our best to do something nice.

Social media fails to show the before and after. It doesn’t show the potential flare-ups for days. It doesn’t show the agony and stress over whether to go out in the first place for fear of getting an attack.

It’s for this reason we may be scared to post.

We’ll receive messages from people saying, “Great to see you looking so well.” Yet, we’re not well. We still have chronic migraine, and tomorrow may look very different.

A seemingly innocent social post can lead to many false assumptions.

3. Feeling unworthy of love

Our identity can get so wrapped up inside being a migraineur, and this can have a devastating impact on our self-worth. Some people living with chronic migraine may even feel unworthy of love.

Despite being some of the most resilient, courageous, and kind people I’ve ever met, so many people living with chronic migraine find it hard to imagine why anyone would choose to be with them.

Why sign up for all the missed events, caretaking, and limited options if you can be with someone who doesn’t have migraine instead?

A reminder for anyone reading this with chronic migraine: You are worthy of love even when you’re sick!

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4. Constantly feeling behind in life

Chronic migraine can alter the path we had planned for life in so many ways — from jobs to relationships to moving out and buying a house. It can make you feel incredibly stuck or like you’re being left behind.

It can be hard to watch from the sidelines as friends hit the usual life milestones. One of the most challenging parts of this is knowing how capable you are and having so many dreams for the future — while you’re stuck in a body that won’t allow it.

5. Grief for our old life

Grief is not just about death. It’s a common and natural emotion many people with chronic pain and illness experience.

We miss the person we were before chronic migraine. We grieve the life we thought we were going to live. We miss the freedom we once enjoyed.

It’s one of the trickiest mental challenges many of us navigate with chronic migraine, and most of us deal with this grief on our own.

Please know you’re not alone if you’re experiencing grief for your life before chronic migraine. You may find a safe space to express it in a support group or with a therapist.

You may be able to find a local mental health professional through Healthline’s FindCare.

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6. Downplaying our symptoms

Most of us with chronic migraine are incredibly good at faking feeling well. We’re experts at putting on a brave face and pushing through our pain and symptoms.

We downplay our symptoms for several reasons.

Firstly, we worry that if we’re honest about the reality of our symptoms, we’ll make others feel uncomfortable. We end up downplaying our symptoms so we don’t leave people feeling uneasy about how to respond.

Another common reason we tend to downplay our symptoms is fear of being judged or not taken seriously.

There is so much stigma around migraine. So many people assume it’s just a bad headache. It can feel easier to downplay our pain and symptoms instead of dealing with ignorant comments and unsolicited advice.

Many of us also downplay our pain and symptoms for fear of sounding like we’re always complaining. We don’t want to feel like a burden to our loved ones, so we pretend we’re OK even when we aren’t.

Takeaway

Living with chronic migraine is difficult, but these invisible burdens can make it even harder.

Finding support in community is important for feeling seen, heard, and understood.

Sharing our experiences with those who experience migraine and those who don’t helps break down the stigma and create empathy for those who live with migraine as a fact of life.

Medically reviewed on April 10, 2024

Join the free Migraine community!
Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

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About the author

Amy Mowbray

Amy is an experienced migraine advocate who has built a supportive online community of over 25 thousand people living with migraine from all around the globe. She is passionate about not only raising awareness for migraine and reducing the stigma around this misunderstood disease but also helping those living with migraine feel less alone. Find her on her website and Instagram.

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