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What do you say when someone looks at you and says,
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but you don't look sick or are you going to rest again?
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While your brain is doing everything it can just to go through your next 10 minutes.
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Welcome to Migraine Heroes,
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a podcast for people living with chronic migraines with years of pain,
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misunderstanding and lack of answers.
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I'm Diane Ducarme.
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I've helped more than a thousand people reduce the burden of migraines
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and feel more in control.
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My mission in life?
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To help a million people.
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Each episode brings you grounded insight into what your body might be asking for
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and what can truly help.
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Just to keep you fully supported,
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this podcast is educational.
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For diagnosis or medication,
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always work with your doctor.
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Now, take a breath and let's dive in.
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In this episode, you will learn how to respond
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when someone minimizes, questions or misunderstands your migraine
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without having to over-explain yourself.
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How to adapt your response depending on who is in front of you,
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whether it's a colleague, a friend, a family member
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or someone giving you unsolicited advice.
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And how to protect your dignity and your boundaries
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when education is not enough,
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including what to say when someone keeps diminishing your pain.
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Stay with me till the end, because by the end of this episode,
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you will have 50 ready-to-use responses for those moments when you're tired,
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when you're hurting,
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and simply do not have the energy to explain migraine all over again,
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but also defense mechanisms when people are slightly mean to you.
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So I come from a very large, very loving and very tolerant family.
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And as large families sometimes are, slightly gossipy.
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And my grandmother has lived with migraine since she was 2 years old.
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She also has had hearing problems.
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And many decades ago, doctors actually drilled a hole behind her ear
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and touched her trigeminal nerve,
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leaving, you know, a very deep, very visible hollow behind her ear
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that is still there today.
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Now, whether a migraine is partly genetic
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or partly related to what happened structurally,
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or a combination of both, I can't say.
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But what I can say is that her pain is very real, yeah?
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And my grandparents are extraordinary.
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He is 94, she's 90.
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They've been together since they were 18 and 22.
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And they still live at home together, just the two of them.
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And my grandfather gets up at 5 in the morning,
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cooks and does the grocery shopping,
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takes care of many practical things.
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And even in this kind, loving family,
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I still hear comments sometimes like,
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Well, grandpa does everything.
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Or, granny has a migraine.
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Again, she needs a nap.
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And every time I hear that, something in me wants to say,
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or actually does say,
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Have you actually looked behind her ear?
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Have you actually thought what she has lived with for all these years?
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She barely complains.
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She does not make a performance out of her pain.
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Most of the time, she simply carries it quietly
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and waits for it to pass.
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And that has taught me something important.
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Migraine stigma does not always come from cruel people.
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Sometimes it comes from people who love you deeply,
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but simply have no idea what it feels like
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to live inside your body.
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And when it's not your own family,
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but perhaps your partner's family,
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your mother-in-law, your colleague, your friend,
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those comments can feel even harder.
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You're always tired.
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You never have much energy.
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You're always cancelling.
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But there's always something.
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They may not sound openly mean,
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but they're also not exactly kind.
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A sweeping judgment about somebody's character,
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when what you're actually really seeing
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is the consequence of a neurological disease.
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And it deserves to be corrected.
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So today, I want to equip you with the words to do exactly that.
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So think of this as an episode you can come back to whenever you need it.
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When somebody misunderstands you,
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when you're too tired to find the words,
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or when you simply need a little inspiration to stand up for yourself
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without having to defend your entire existence.
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So now, let us make this very practical.
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So here are 50 ways to respond when a migraine is misunderstood.
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Now, let's make this practical.
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You will not need all 50.
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Some are educational.
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Some are designed for a workplace.
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Others are designed for people you love.
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The important thing is to find the language that sounds like you.
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Now, let's start with a situation when someone says,
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but you don't look sick.
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Migraine often isn't visible from the outside,
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but the symptoms can be very disabling.
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That's one of the difficult things about migraine.
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You can't always see what my nervous system is dealing with.
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Looking well and feeling well are, unfortunately,
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two very different things.
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I'm actually working quite hard right now to look this normal.
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You can even add, so I will take this as a compliment.
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I appreciate that I don't look ill.
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I still need to respond to what my body is telling me.
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A second situation is when someone, for example,
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says it's just a headache.
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Migraine is actually a neurological disease.
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The headache is only one possible part of what is called an attack.
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I used to think of it as a headache too,
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but I have come to learn there are very distinct things.
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There can also be nausea, sensory sensitivity,
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cognitive changes, dizziness, and exhaustion.
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A headache is something I can often work around.
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A migraine attack can affect my whole nervous system.
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I wish it were just a headache.
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That would make my life so much easier.
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I know people use the word casually,
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but medically migraine is much more complex than ordinary head pain.
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So next situation is when someone says, again, quote 11.
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Yes, unfortunately, migraine is a recurring condition,
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so attacks can happen repeatedly.
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Yes, and believe me,
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I'm more frustrated about that than anyone else is.
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That's the nature of this disease.
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I don't get to choose when an attack arrives.
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Yes, chronic conditions tend to repeat themselves.
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That's part of what makes them chronic.
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I know it seems frequent from the outside.
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Living inside, it feels even more frequent.
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Next situation, when someone says,
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have you tried drinking more water?
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Hydration is important, and I pay attention to it.
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Unfortunately, migraine is much more complicated than dehydration.
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Yes, I've tried hydration.
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I'm working on this with a much broader management strategy.
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Thank you for wanting to help.
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What helps me most right now is support rather than troubleshooting.
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I know that suggestion comes from a good place.
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I've been managing this condition for quite a while now.
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Sometimes I need someone to believe me more than I need another advice.
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Next situation, when your boss or colleague does not understand.
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Now, this is a tricky one,
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because migraine can easily be misread as disengagement.
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And I remember Jade telling me that before she was fired,
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people thought she no longer cared about her work.
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And in reality, she loved her job.
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After her job, she was simply sick so often
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that reduced availability looked like reduced commitment.
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So when speaking to your manager or colleague,
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I would often start with the positive, what you value, what you enjoy,
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and your commitment to the work, then explain the migraine.
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For example, I really love this work and care about doing it well.
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Migraine sometimes affects how available or energetic I appear,
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but I don't want this to be mistaken for a lack of commitment.
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So that framing, for example, can help people interpret what they see a bit more accurately.
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Not, she doesn't care, but she cares and she's managing a disease.
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That said, I do not know your work context.
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Every workplace has a different culture around illness, disclosure, and vulnerability.
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So some are open, many are not.
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So use these sentences as options, really, not instructions, please.
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Share only what feels safe and what feels useful.
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The goal is to protect your health and to preserve your professional identity
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and communicate it in a way that fits your particular workplace.
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I really care about doing my job well and do contribute to the team.
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And managing migraine properly actually helps me remain productive.
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I really want to stay present and useful throughout the day.
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So when an attack happens, reducing light and noise early
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can sometimes help me remain functional rather than losing the entire day.
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I'm very committed to doing this job well and meet expectations.
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I'm not asking for lower expectations.
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I'm asking for conditions that allow me to meet them.
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I really value being able to stay engaged with my work.
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And migraine can fluctuate quickly.
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If I need to step away briefly, it's because I'm trying to manage the symptoms
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before they become more disabling.
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I really appreciate being able to contribute here.
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And I'm grateful for flexibility around something I cannot always predict.
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I care a lot about being part of the team.
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So if you notice me becoming quieter or reducing stimulation,
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I'm usually managing symptoms, not disengaging from the work or the people around me.
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I really want to keep doing my work well.
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So I prefer to focus on what helps me stay productive
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rather than on whether the condition looks severe from the outside.
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I care deeply about my work and what I bring to it.
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Migraine can affect my capacity at certain moments,
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but it does not define my professional ability or my commitment.
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I'm disappointed too. I wanted to be here.
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When I cancel because of migraine, it isn't because the friendship matters less.
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It's because my body has reached its limit.
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Please keep inviting me.
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A no today does not mean it won't be a yes tomorrow.
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I know my unpredictability can be frustrating.
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It frustrates me too.
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You don't need to fix this.
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Knowing you understand makes a huge difference.
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I would rather cancel than spend the entire evening pretending I'm okay.
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Sometimes loving someone with migraine means allowing plans to be flexible.
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I miss being spontaneous too.
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My absence tonight is about symptoms, not about how much I care about you.
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Could we make a quieter backup plan?
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I would love to see you if my symptoms allow for it.
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Next situation when family members minimize your experience.
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I know migraine may look different from what you imagined illness should look like.
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I'm not asking you to completely understand what it feels like.
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I'm asking you to trust that I know what I'm experiencing.
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When my symptoms are questioned,
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I end up caring the migraine and defending the migraine at the same time.
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You may not be able to see the symptoms, but they are real.
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I need compassion more than comparison.
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Please don't compare my attack with somebody else's headache.
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They aren't the same neurological experience.
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I know you want me to push through.
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Sometimes stopping earlier is exactly how I prevent things from getting worse.
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What would help me most right now is simply,
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I believe you, what do you need?
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I'm learning to respect my limits instead of feeling ashamed of them.
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And then the last three, maybe the most important ones.
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When you have explained enough,
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when somebody continues questioning,
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when you're exhausted,
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when you're in pain,
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you're allowed to say.
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I've explained what I'm dealing with,
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and I don't have the capacity to defend it further.
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I'm going to focus on taking care of myself now.
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You don't have to fully understand what I'm experiencing,
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but I do need you to respect it.
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Right now, I need to look after myself.
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I don't have the energy to justify my health today.
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I'm going to take care of myself now.
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End. End the conversation.
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Now, when I first started working with migraine,
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one of the things that struck me often
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was how people still thought of migraine as a bad headache.
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more and more education is being done by advocacy groups,
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which is absolutely phenomenal and so necessary,
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precisely because migraine can be so invisible.
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We have met so many women who look absolutely radiant
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and capable, completely fine from the outside,
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and you would have absolutely no idea
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what they're carrying internally.
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So one thing I sometimes tell people to do
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is go online and look.
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Go to a migraine support group,
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search for migraine communities,
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read a Reddit thread,
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read a Facebook thread,
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and just observe for a while.
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read the descriptions of people lying in dark rooms,
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missing work, missing birthdays,
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vomiting, losing words,
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becoming unable to tolerate light or sound
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or trying treatment after treatment.
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When someone sees these walls of pain,
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it's becoming much harder to dismiss migraine
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as just a headache.
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It can actually be quite confronting
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because suddenly you're seeing hundreds
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or thousands of individual experiences
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that are normally hidden behind closed doors.
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And if there's someone in your life
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whose comments really affect you,
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a partner, a parent, a manager, a mother-in-law,
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you can even create a small educational stack for them.
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Include a simple medical definition of migraine,
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one or two strong scientific articles,
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information about a respected migraine organization,
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perhaps a few randomized patient experiences
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that illustrate what living with migraine
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can actually look like.
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Sometimes people do have empathy.
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They simply do not yet have the information
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that allows that empathy to switch on.
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You do not have to make a courtroom case for your pain.
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But when a relationship matters to you,
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education can sometimes be a very powerful bridge
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between I don't understand and oh, I had no idea.
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So here's your action for today.
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Open the notes application of your phone
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and create a note called Migraine Responses
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and choose five sentences from this episode.
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One for work, one for family,
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one for friends, one for unsolicited advice,
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and one from the moment when you simply
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do not have the energy to explain anymore.
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Rewrite them until they sound like your natural voice.
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Because boundaries are surprisingly difficult to invent
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when your head is pounding, light-screened and unbearable,
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and your brain cannot find words.
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Prepare them before you need them.
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The next time somebody says,
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but you seemed fine this morning,
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you do not have to invent an explanation.
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You already have one.
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And there is one more sentence
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I would love you to keep somewhere visible.
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I do not need another person's understanding
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before I'm allowed to respond to my body's needs.
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You can educate people.
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You can invite people into your experience.
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You can ask for support.
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But your symptoms do not become real
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only when somebody else finally understands them.
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They were real all along.
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every small step you take
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moves you closer to freedom.
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You are powerful, you are resilient,
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and you are not alone.
