Should You Tell Your Employer About Your Migraine? Who to Tell, When, and How Much to Share

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Margarine at work. Tell your boss or not.

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Welcome to Margarine Heroes, a podcast for anyone living with margarine and

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wondering why nothing has fully worked yet. I'm Diane Ducarme. Over the past seven years,

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I've helped hundreds of people living with margarine. What I've learned?

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No two margarine stories are exactly the same and none of them are simple.

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That is why, in this podcast, we explore margarine from many different angles.

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Food, hormones, stress, sleep, the nervous system,

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emotions, and much more, through the lens of both modern science and

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traditional Chinese medicine. A quick note before we start. What we talk about here is educational. For anything related to diagnosis or

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medication, please keep working with your doctor. Now, take a deep breath and let's dive in.

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In this episode, you will learn how to decide whether disclosing your margarine at work is actually in your best interest,

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rather than feeling that you automatically have to tell or not to tell everyone.

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Who may genuinely need to know, your manager, human resources,

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occupational health, or perhaps one trusted colleague, and why these are very different

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conversations. And a simple framework for deciding what to say, how much medical information to share, and what specific

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support to ask for, so that the conversation becomes about helping you work well, rather than defending why you're sick.

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So stay with me till the end, because by the end of this episode, you will have a very simple three-question

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exercise you can do at home to decide whether you want to disclose your margarine, and if you do,

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exactly what you want to disclose.

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So, look, I've seen almost the entire spectrum here of what can happen when someone

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discloses or does not disclose margarine at work. And there's, in particular, three very different stories that have stayed with me.

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The first was a woman I met through social media, and she'd been open with her employer about how much she was suffering.

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She was eventually laid off and entered into a legal fight against her employer.

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So she spent an enormous energy defending herself and trying to push the system forward while continuing to live in massive pain.

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And we even interviewed her, because we felt her story mattered.

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But when people listened, many of them told us it was simply just too painful.

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They were hoping for a happy ending, and there was none. This was just too sad.

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So this one is on the extreme spectrum. As you disclose, things go badly, you fight back, and the fight itself can ask

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even more from a body that is already very vulnerable. That's the first story.

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Then there's a second story, and the story of Jade in Australia.

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And we only had been working together for about two weeks when she lost her job.

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And I remember having her on the phone and she was crying. Her employer had interpreted her absences as

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disengagement, as though she no longer cared about her work, when in reality she was living with extremely severe margarine.

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Profound sort of aura episodes where half of her body would become paralyzed.

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And we continued to working together, in spite of her being fired, and her margarines faded and eventually stopped.

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And she was able to find work again, quite fast actually, I think within four months.

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And her story took a completely different turn, and it remains one of the ones that is so dear to my heart.

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Beautiful story.

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And then there's the one of Jaya. Her boss was actually Tassilo.

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Tassilo works with us, and he contacted us. He said, can you help her? He's on the board.

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She's such a great employee. I really value what she brings to the company and to my team.

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It seems like her margarine are coming a bit clockwise in the impact of work.

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And her case turned out to be extraordinarily complex and unusual.

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I thought it was going to be a walk in the park. It was not.

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And because, you know, Tassilo had put so much trust in me and us,

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I remember feeling sort of that extra layer of responsibility to understand, you know, what was happening.

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But Jaya stayed with her employer.

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She got over her margarine and continued an extraordinary career in the finance department of her company.

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And so you have here three people, three completely different approaches and outcomes, three different situations.

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And that is why I want to be very careful with this subject.

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Disclosure is a big decision.

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When you live with margarine, you will receive information and advice.

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But ultimately, you are the person who has to live with the consequences of whatever decision you end up making.

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So I do not want this episode to tell you what you should do.

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I want to acknowledge with humility the limits of what anyone from outside can actually tell you.

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What I can offer you today is a framework.

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Questions to ask yourself.

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Situations to consider.

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Risks to think through and possible paths you may want to explore.

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And then you decide what feels appropriate for your life, your health, your workplace and your circumstances.

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So here's the deal.

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Margarine is an invisible disease at work.

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So one of the things that make it so difficult to navigate in the workplace is that margarine is largely invisible.

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If you break a leg, people can see the cast.

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If you've had surgery, there may be an obvious physical sign that something has happened.

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But with margarine, you can be sitting at your desk looking completely normal from the outside,

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while inside your body something very different is happening.

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You may be in severe pain.

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You may feel completely nauseated.

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Light may feel aggressive or sound may become unbearable.

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You may be dizzy.

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You may be exhausted or struggling to think clearly.

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And for some people, vision changes or language can become difficult.

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Sensations change and part of the body may feel weak or strange or paralyzed like in the case of Jade.

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And yet, to the person sitting across from you, none of this may be visible.

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And that creates a first barrier, a barrier of invisibility.

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Your employer or your colleagues can only see your external behavior.

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They may see that you're quieter than usual, slower, absent from a meeting,

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less responsive or unable to come at work.

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But they cannot necessarily see what is causing it.

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And when people cannot see the cause, they naturally start interpreting the behavior.

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She's disengaged.

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He's not reliable.

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She doesn't seem motivated.

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He was fine yesterday.

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And so in our team, Hélène was a senior leader at Google.

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And I really, really like the way she thinks and what she brings to the value

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and how much she can help us help people.

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And one of the things she taught me was you need to snorkel before you dive.

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And snorkel means stay on the surface of the little observations you have.

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Do observations, but do not interpret.

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That's something that we, as a team of 12, I really try to apply to all of us.

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And then there's a second barrier.

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It's a barrier of lived experience.

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So empathy is our ability to understand what the other person is feeling

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and to some extent, to emotionally connect with that experience.

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But if someone has never had a migraine,

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there is a limit to how fully they can understand what you're describing.

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They may know what a headache feels like,

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and they may know what tiredness feels like or what they think.

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They may even genuinely want to understand you,

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but they may never have experienced what it is like

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to have your nervous system become so overwhelmed

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that light, sound, movement, thinking, and sometimes even speaking become difficult.

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So you can end up with two people having a conversation

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from completely different realities.

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So you're trying to explain an internal experience

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that is so intense, so physical, so disabling.

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And the other person is trying to understand that experience

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through something they cannot see and may have never felt.

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In French, we have an expression for this.

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We call it un dialogue de sourd.

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Almost a dialogue between two people who cannot truly hear one another.

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That is why these conversations can become so heavy and so complex.

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And it's not always because the employer isn't caring.

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Sometimes there is simply an enormous gap between what you're living

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and what they're capable of perceiving.

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And so, of course, occasionally you may be fortunate enough

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to have a manager who has a migraine themselves

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or who lives closely with someone else who does.

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Suddenly there can be an entirely different level of understanding.

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You may say very little, and they already know.

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But that is not something you can count on.

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This is important when deciding whether you disclose the migraine at work.

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You are not simply communicating a diagnosis.

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You're trying to make an invisible experience understandable

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to someone who may have no reference point for it.

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That is one of the reasons the conversation requires so much care.

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And so, as a result, and really not surprisingly,

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there was a review of migraine in the workplace

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in E Neurological Psy in 2022, which is a journal.

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And they highlighted that a very large proportion

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of migraine-related productivity losses came from presenteeism.

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So people coming to work despite migraine,

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but working at substantially reduced capacity.

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And a 2025 study in the journal Headache illustrates this also beautifully.

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Among employees who screened positive for migraine

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in large United States healthcare organizations,

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participants reported relatively few completely missed work days,

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but considerably more days during which productivity was reduced

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by at least half.

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And so the researchers estimated approximately 10 days

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of lost productive time per year for each affected employee.

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Now, it's a very small number and a very large one,

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simply because people were actually able to see that this can work.

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It's not always the case.

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So it's a theoretical number.

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But when somebody says, but you hardly ever call in sick,

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it does not necessarily mean migraine is having

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a little impact on your working life.

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So you may be paying for staying at work with concentration,

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exhaustion, reduced speed, errors, anxiety about the next attack,

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or hours of recovery once you get home.

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And this is why workplace conversations can matter.

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But, but, disclosure, it has a cost.

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Because there's another science to this.

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Migraine does remain misunderstood.

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So Peter Gudsby and his colleagues, I quite like Peter Gudsby.

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And you're not going to hear me say many name of scientists

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because I would butter their name.

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And also it adds to your mental load.

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But Peter Gudsby is quite out there and has done such remarkable work.

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And oftentimes when I mention journal, he was the lead author of these articles.

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So he published a large international survey in Cephalalgia in 2025,

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involving more than 3,700 people with migraine.

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And 71.5% described their migraine as disabling.

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So nearly 80% reported difficulties completing work tasks

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or having negative effects on their careers.

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And importantly for today's conversations,

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participants report particularly high level of perceived stigma among work colleagues.

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So the fear of being misunderstood is not imaginary.

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Someone may think, yeah, she is unreliable.

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He cannot cope with pressure.

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She's always asking for special treatment.

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Perhaps we should give this project to someone else.

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And those judgments are not medically justified,

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but stigma can influence human behavior.

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And therefore my first guideline is,

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do not disclose simply because you believe you owe anyone or everyone an explanation.

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Your medical history is personal.

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Instead, you can ask,

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what problem am I trying to solve by telling this person?

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And that question can change everything.

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So first part of the framework is,

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who should you tell?

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So there's a major difference between telling your employer and telling everyone at work.

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Those are not the same thing.

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So imagine information moving through circles.

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The smallest circle is you and your healthcare team.

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The next circle might contain one person inside your workplace who can actually help you.

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The other circle contains colleagues, clients,

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customers, and people who have no practical reason to know.

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You generally want to start with the smallest useful circle,

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your direct manager.

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So your manager may be the appropriate person when

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is affecting things your manager controls.

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For example,

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your working hours or your ability to occasionally work remotely,

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how meetings are scheduled,

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where you sit,

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whether you can temporarily step away during an attack,

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whether deadlines can sometimes be reorganized,

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whether somebody can cover a safety critical task if an attack develops.

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So notice what you're doing here.

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We're not beginning with your entire medical history.

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We're beginning with work function.

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So instead of saying,

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I need to explain everything that has happened with my health over the last 10 years,

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the conversation can become,

[12:15]

I have a condition that can occasionally affect my ability to tolerate bright light and to

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concentrate.

[12:21]

There are a few small adjustments that would help me continue working effectively.

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That is a very different conversation.

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Your goal is not to prove that you suffer enough.

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Your goal is to identify what allows you to work better.

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The second type of people you may share that with.

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So in the,

[12:38]

who should you tell part of our framework is human resources or occupational health.

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So there are situations where your direct manager may not be the first destination.

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So if you need a formal accommodation,

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like recurring medical leave,

[12:52]

workplace documentation,

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a modification that requires organizational approval,

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or greater confidentiality around medical information,

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the appropriate route may not,

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maybe human resources,

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occupational health,

[13:04]

another designated workplace health professional.

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And so the precise rules depends heavily on the country where you work.

[13:12]

For example,

[13:13]

the European commission guidance was published in 2024 and explains that

[13:17]

reasonable workplace accommodation should be tailored to the employee's specific needs.

[13:21]

Importantly,

[13:22]

it's recommended processes.

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An employee can initially communicate the needs for accommodation without necessarily

[13:29]

disclosing the specific nature of the disability.

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And that discussion should be treated confidentially and shared only with people who

[13:36]

need to know.

[13:37]

And in the United States,

[13:38]

for example,

[13:39]

confidentiality protections also apply in important circumstances around disability

[13:44]

related medical information and workplace accommodation.

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So it does not mean that identical rules apply everywhere.

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They don't.

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So if your job income or legal rights depend on the decision,

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check the employment and disability rules in your country,

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your employment contract and your organization's policies.

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But there's a useful general principle here.

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Share the information necessary to solve the workplace problem,

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not automatically your entire medical file.

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Now,

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what about your colleagues?

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So this one is different.

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A colleague normally cannot approve formal workplace accommodation.

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So why tell them?

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There may be excellent reasons.

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Perhaps there's one colleague beside you who should know what to do.

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If you suddenly develop severe visual symptoms,

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perhaps somebody needs to know that when you become unusually quiet or when,

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for example,

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you have difficulty finding words,

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you are experiencing an attack.

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You're not angry with them.

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Perhaps you have somebody you trust who can take you somewhere quiet or bring you water

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or cover for a meeting.

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That can be enormously valuable.

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But you do not have to make an office-wide announcement.

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And there's another practical point.

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Before telling a colleague,

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ask yourself whether you are comfortable with the possibility that the information

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may travel farther than you intended.

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Not because people are necessarily malicious.

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People simply talk.

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Once personal information enters an informal social network,

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you may have less control over it.

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So choose carefully.

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Now,

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second part of our framework.

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Under what conditions should you consider disclosing?

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So here are the questions I would use.

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I would use three.

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First,

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is migraine materially affecting your work?

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So perhaps attacks are causing repeated absences.

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Perhaps you're staying at work,

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but your productivity collapses during attacks.

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Perhaps lighting,

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noise,

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irregular meals,

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night shifts,

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or certain scheduling patterns consistently make work harder.

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Perhaps your manager began asking why your performance is occasionally inconsistent.

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And so if nothing at work needs to change and you do not want to disclose,

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there may be no practical reason to disclose simply for the sake of disclosure.

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But if something needs to change,

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silence may make it difficult for other people to understand what support is needed.

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There was a scoping review published in Cephalalgia in 2021,

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and it examined workplace factors and interventions associated with productivity

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in people with migraine.

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And so greater autonomy,

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social support,

[16:11]

and job satisfaction were associated with better productivity,

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while demanding and migraine-unfriendly work environment

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were associated with poor productivity.

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So workplace migraine education programs were also associated in several studies

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with meaningful improvements in productivity.

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So sometimes the environment really can be changed.

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And sometimes remarkably small changes matter.

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Reducing fluorescent lighting,

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allowing sunglasses or a screen filter,

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a quieter workspace,

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predictable breaks,

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access to water and regular meals,

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flexibility around starting time,

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occasional remote work,

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the ability to step into a dark room when an attack begins,

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avoiding unnecessary perfume or strong scents,

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a little flexibility after a severe attack.

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They're not necessarily dramatic interventions.

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They are ways of removing friction between your nervous system

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and your working environment.

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Now, second thing to consider,

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under what conditions should you consider disclosing?

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So second consideration is your role safety sensitive.

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So this deserves really special attention.

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If your symptoms could affect driving,

[17:14]

operating machinery,

[17:15]

working at heights,

[17:17]

caring for vulnerable people,

[17:18]

making safety critical decisions,

[17:20]

or performing another activity where certain visual,

[17:23]

cognitive or neurological symptoms might create risk,

[17:26]

disclosure may become less about privacy

[17:28]

and more about having an appropriate safety plan.

[17:31]

So the same applies if medication you take

[17:33]

can significantly affect alertness

[17:35]

or another ability essential to the role.

[17:37]

And in those circumstances,

[17:39]

you may need advice from your doctor,

[17:41]

occupational health professional,

[17:42]

or the appropriate workplace health channel.

[17:45]

So this is one situation where I would not make the decision

[17:48]

based simply on whether you feel embarrassed

[17:50]

about telling somebody.

[17:51]

Stay safe, it does change the equation.

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So third lens for under what conditions

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should you consider disclosing?

[17:59]

It really relates to, are you asking for something?

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So this may be the most powerful guideline

[18:06]

of the whole episode.

[18:07]

Before you disclose, know your ask.

[18:10]

Do you want flexibility around working hours?

[18:13]

Permission to work from home

[18:14]

during the early phase of an attack?

[18:16]

A workstation away from harsh lighting,

[18:18]

short recovery breaks, quiet room, etc.

[18:21]

So you move from, when you know the ask,

[18:24]

the conversation becomes clearer.

[18:26]

You move from, I have a migraine

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and I don't know what to do,

[18:30]

to I have a medical condition

[18:32]

that occasionally affects me in this specific way.

[18:35]

And this adjustment would help me

[18:37]

continuing delivering my work.

[18:40]

And here's something I've noticed over the years.

[18:42]

The right ask depends on how your migraine

[18:45]

actually show up.

[18:47]

So let me put a few questions to you

[18:50]

and you can answer them in your head.

[18:53]

When an attack is building up at work,

[18:56]

what gets to you first?

[18:58]

The light, the noise, or the fog

[19:01]

when you're trying to think?

[19:04]

Looking back, do your attacks

[19:05]

tend to follow short nights,

[19:07]

stressful stretches, or meals you skipped?

[19:12]

And once it's there,

[19:14]

are you more irritable and wound up

[19:16]

or more overwhelmed and drained?

[19:19]

If you're not sure, that's normal.

[19:21]

Most of us have never been asked

[19:23]

to look at our migraine this way.

[19:25]

That's exactly what the Migraine Heroes app is for.

[19:29]

A few steps in, you'll get a first look

[19:31]

at your starting pattern.

[19:32]

And with the daily check-in,

[19:34]

you can start noticing what really comes

[19:36]

before your attacks.

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So when you sit down with your manager,

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you're not guessing.

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You know what would help you work well.

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So the third part of the framework,

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when might you choose not to disclose?

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And so there's also legitimate reasons

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to not disclose broadly.

[19:54]

Perhaps your migraine is well-controlled

[19:56]

and it does not affect your work.

[19:58]

Perhaps you require no workplace changes.

[20:00]

Perhaps you work from home.

[20:02]

Perhaps the person you're considering telling

[20:04]

has no ability to help.

[20:06]

Perhaps you simply value your medical privacy.

[20:08]

Or perhaps you are in a workplace

[20:10]

where you have already observed poor boundaries

[20:12]

around confidential information.

[20:14]

And you can take all of that into account.

[20:17]

So disclosure is not one irreversible jump

[20:20]

from secrecy to complete transparency.

[20:22]

Think of it as a dimmer switch

[20:24]

rather than an on-off switch.

[20:26]

You can disclose a functional need

[20:28]

without giving a diagnosis.

[20:30]

You can disclose a diagnosis

[20:31]

without describing every symptom.

[20:33]

You can tell occupational health

[20:35]

without telling your entire team.

[20:36]

You can tell your manager while asking

[20:39]

that medical details remain confidential.

[20:41]

And you can revisit the decision later.

[20:44]

This is important because people sometimes

[20:46]

wait until they reach crisis point.

[20:48]

They compensate.

[20:49]

They hide attacks.

[20:50]

They work through enormous pain.

[20:53]

They cancel their personal lives

[20:54]

so they can preserve enough energy for work.

[20:56]

Which, by the way,

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sometimes is completely justified.

[20:59]

But then maybe, maybe, maybe one day

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they simply cannot compensate anymore.

[21:04]

So research published in Cephalalgia in 2024

[21:07]

also suggests that the working impact

[21:09]

of migraine research reaches beyond

[21:12]

simple absence in productivity statistics

[21:14]

with greater migraine severity

[21:16]

associated with occupational burnout.

[21:19]

So do not measure the sustainability

[21:21]

of your work only by whether

[21:23]

you're still managing to show up.

[21:24]

Ask yourself, what is showing up costing me?

[21:28]

And maybe that's the object of another podcast.

[21:30]

Sometimes we've had people decide

[21:32]

to pause their career.

[21:34]

Not something I would encourage or recommend,

[21:36]

but sometimes your health really comes first.

[21:39]

And taking the band-aid off is the way forward.

[21:42]

We've seen that too.

[21:43]

Now, what can you do today at home?

[21:45]

So take a sheet of paper tonight

[21:48]

and write the three words across the top.

[21:50]

Why, who, and what.

[21:52]

Under why, write the exact workplace problem

[21:55]

you want to solve.

[21:56]

Is it lighting, scheduling, attacks during meetings,

[21:59]

absence, recovery time, safety, or something else?

[22:02]

Under who, write the smallest number of people

[22:05]

who actually have the power to help

[22:07]

solve that specific problem.

[22:09]

And under what, write the minimum information

[22:11]

they generally need.

[22:13]

Then underneath, write one sentence beginning,

[22:16]

what would help me work well is.

[22:19]

And that sentence is often more valuable

[22:22]

than a 10-minute explanation of everything

[22:24]

migraine has taken from you.

[22:26]

You're not preparing for confession.

[22:27]

You're preparing for conversation

[22:29]

about what allows you to function at your best.

[22:32]

And also, one bonus one from me.

[22:35]

Always express enthusiasm.

[22:37]

Express enthusiasm about your work and start with that.

[22:40]

That will completely frame the conversation.

[22:42]

That's all for today.

[22:44]

I hope this episode added one more piece

[22:46]

to your migraine puzzle.

[22:48]

Migraine is complex, but it's not random.

[22:51]

Every time we understand a little more of it,

[22:53]

we move one step closer to lasting relief.

[22:57]

If you'd like to apply what we've discussed

[22:59]

to your own life,

[23:00]

you can find us by searching Migraine Heroes

[23:02]

in the App Store or Google Play.

[23:05]

Look for the green icon

[23:06]

with the love heart in the brain.

[23:08]

Your body has a story to tell.

[23:10]

Let's keep listening.

[23:11]

I will be back with you soon.