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What if one of the hardest parts of migraine is not the pain itself,
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but slowly feeling as though your world is getting smaller because of it?
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Welcome to Migraine Heroes, a podcast for people living with chronic migraines with years of pain,
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misunderstanding, and lack of answers. I'm Diane Ducarme. I've helped more than a
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thousand people reduce the burden of migraines and feel more in control.
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My mission in life? To help a million people. Each episode brings you grounded insight
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into what your body might be asking for and what can truly help.
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Just to keep you fully supported, this podcast is educational. For diagnosis or medication,
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always work with your doctor. Now, take a breath and let's dive in.
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In this episode, you will learn how to create migraine-safe forms of connection that do not
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require long social plans or energy that your body can give. How to tell the people around you what
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support actually looks like so they can help you without guessing. And why the quality of
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your relationships matter more than the quantity and how ideas like digital connection and the
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concept of satsang can help you stay deeply connected even when physical presence is
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difficult. Stay with me till the end because at the end of this episode, I will give you three
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very simple things you can do today without leaving your home to start feeling more connected
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and more supported. There can be a very particular kind of loneliness that comes with migraine in
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particular and I'm not sincerely sure to know another disease that can cause this. You may
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love your friends. You may love your family. You may desperately want to participate. But
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then comes the calculation. Will the restaurant be too loud? Will there be bright lights? Will
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your friend be wearing perfume? What happens if the migraine arrives halfway through? Will
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everybody be disappointed if I cancel again? Will someone think I'm exaggerating? And sometimes,
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it simply becomes easier to say no before migraine gets the opportunity to say no for you.
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And after enough cancelled dinners, birthdays, holidays, meetings, school events, dates,
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weekends away or family afternoons, you may notice something painful happening. People stop asking.
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Or perhaps, even more painfully, you stop expecting to be asked. That is migraine isolation.
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So migraine is so much more than the hours of head pain. One of the mistakes we make when talking
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about migraine is measuring the condition only during an attack. So migraine is a neurological
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disease, but its consequences reach far beyond neurological symptoms. So there's the attack
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itself, of course, but there can also be the anticipation of the next attack, the recovery
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afterward, the uncertainty about the triggers, the concerns about work, the guilt about family
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responsibilities, and the constant negotiation between what you want to do and what your nervous
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system, what your brain may allow you to do. And there was a major qualitative synthesis,
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which was published in Health Services Insights in 2026, that examined 46 studies of adults living
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with migraine. And the researchers identified something important. Migraine repeatedly affected
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not just the symptoms, but people's identity, relationships, participation in everyday life,
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sense of control, and experience of being understood by others. The researchers described
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unpredictability and invisibility as central parts of the social burden of migraine. In other words,
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migraine does not always simply interrupt your day. Sometimes it begins to reorganize your life
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around the possibility of interruption. And that distinction matters. So this moment has happened
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to me time and time again. I meet someone when they first come to us, and during what we used
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to call onboarding, and then I meet them again later at graduation, or when we record a podcast
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together. And sometimes it feels as though I'm meeting an entirely different person. Except I'm
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not. I'm meeting them. I'm meeting the person who is there all along. When someone first starts,
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migraine can sometimes, you know, have reduced them to what feels like a shadow of themselves.
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And I don't mean that not kindly. They can seem like a smaller version of what should be themselves.
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A person whose world, confidence, and sort of energy and personality, they've gradually been
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compressed by years of pain. And I used to find those conversations heartbreaking. I have done
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these calls for many, many years now. And there were times when I had to really hold back tears,
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and sometimes I couldn't. I was trying not to, because of course, it's not appropriate for me to
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cry during someone else's onboarding call. But I would almost have to remind my own body, and
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sometimes I would explicitly, like, this is not happening to me right now. You're listening to
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someone else's story at the end. Because caring story after story can be a lot. And you might
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imagine after 700 or 1000 of these conversations, I'd become bulletproof that I would have heard
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everything, that very little would surprise me anymore. But it's never happened. And every single
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time, as amazed and humbled as I was at the beginning, by the lives people have lived while
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carrying this disease. And something particularly striking happens when I record our guest podcast.
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I really encourage you to listen to those stories, because they're extraordinary.
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Over the weekend, I reviewed the one of Suzanne, where we're republishing some of our old ones
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and making them shorter, so it's sort of a more digestible chunk. And I was amazed by her. I was
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so inspired. It brought me tears when I was listening to it. And so during the interview,
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I often ask the person to go back in that storm, to remember what life actually felt like at its
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worst. And that can be difficult. Afterwards, sometimes people say, wow, I had forgotten how
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painful that was. I feel so sorry for the person I was then. And I went through so much. And it's
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incredibly moving, because when you listen to these stories, you can hear the change. The voice
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is different. Their energy is different. Their personality can even seem different. But you know
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what? I don't think migraine changed their personality, and then we somehow created a new
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one. I think of it more like a beautiful painting that has slowly been covered by layer after layer
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of smoke, of dust, of grime. And eventually, you can barely see the colors underneath. But the
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painting itself has never disappeared. And when those layers begin to lift, we're not creating
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someone new. We're revealing what was there all along. We are helping someone come home to
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themselves. And I think at the heart of what I have, and we have created, and we're creating
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every day, it's just that. At the essence, if you remember anything about us, it is a profound
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desire. What does life want from you? And I see our role as helping your true and beautiful self
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achieve it. And I hope in anything we do, you can feel that relentless effort to meet you where you
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are and are ready to be, and to remove layers to surface your real you. Now, let's get quantitative
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here before we go into strategies, because the numbers tell such a human story. We have really
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good evidence that migraine can substantially affect relationships and participation. A large
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study published in Mayo Clinic Proceedings in 2016 studied more than 13,000 people with migraine. And
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depending on headache frequency, roughly half of participants reported reduced participation in
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family activities at least once a month. Perhaps even more strikingly, substantial numbers of
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participants felt that their spouse or partner did not fully believe the severity or impact of
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their headaches. Among people with chronic migraine, that figure was almost 44%. So,
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think about that for a moment. Migraine can already take you away from the dinner table.
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If you also feel that the people sitting at the table do not quite understand why you're leaving,
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the experience can become so different. Now, there's the pain, there's the disappointment,
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there may be also shame and guilt and defensiveness, or the feeling that you somehow need to prove that
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you're sick enough. A later study published in the journal Headache in 2019 looked at relationships,
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at careers, finances, and family life. And migraine was associated with difficulties across all of
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these areas, with the burden particularly high for people living with chronic migraine. And so,
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that helps us understand something important. When somebody with migraine gradually withdraws,
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we should not automatically ask, why are you isolating yourself? A better question may be,
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what has made participation so burdensome for you? There's one last study I want to mention. It's one
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of the first ones I read and I saw when I started to investigate this in 2019. So, I've uncovered
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your world. It's a large global study called My Migraine Voice and it really brings this
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isolation to life. Researchers surveyed more than 11,000 people with migraine across 31 different
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countries, particularly people for whom preventative treatment had not worked well enough.
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And what they found was striking. 74% said they spent time in darkness in isolation because of
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migraine, averaging 19 hours every month. And the impact did not stop with the attack itself. 87%
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said migraine affected their professional, private, or social life. And more than half
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said it affected all three. And to me, those numbers show something incredibly important.
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Migraine does not simply create hours of pain. Over time, it can begin to take hours of life,
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of connection, and participation with it. Now, the big challenge is this is an invisible illness
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because it brings the layer of stigma. So, a migraine attack may be completely disabling
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while leaving very little for another person to see. There may be no cast, no bandage,
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no obvious external injury. And you'll see in the podcast, Samantha talks so beautifully about that.
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And unfortunately, the word headache is still commonly used to describe everything from
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mild inconvenience to a serious neurological attack. Research published in Public Library
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of Science 1 in 2013 documented significant stigma associated with migraine. Their work
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helped to highlight how migraine can be received differently from other neurological conditions,
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despite its substantial burden. And so, the stigma comes from other people too.
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But something else can happen as well. Eventually, you may begin anticipating their judgment before
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anybody has actually said anything. You might think, I cancelled last time. I cannot cancel
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again. I don't want to be difficult. I don't want everyone changing plans because of me.
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I'm tired of explaining myself. I will just stay home. And this is one of the ways isolation grows,
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not necessarily through one dramatic rejection. Sometimes it grows through a hundred tiny acts
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of self-protection. And so, we get into what is called a migraine isolation loop. So, let me give
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you that model. Imagine a circle. So, migraine makes participation harder. So, you cancel something.
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Cancelling creates disappointment or guilt. You become more cautious about accepting the next
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invitation. Your social world becomes slightly smaller. You receive less continuous contact.
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You may feel increasingly misunderstood. And eventually, re-entering social situations feels
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harder than it was before. So, this becomes what I call the migraine isolation loop. Notice that
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nobody in this loop has to be doing anything wrong. Your friends may genuinely care about you.
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Your partner may genuinely want to help. You may genuinely want connection. The problem is that
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the traditional format of social connection may no longer fit what your body can reliably tolerate.
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And that leads us to an important shift. The solution is not necessarily more socializing.
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The solution may be more migraine-compatible connection. And that is very different. So,
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here are three things, three strategies I would like you to try. None of them requires you to
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suddenly become more social. Make big plans or push your body beyond what it can manage. The
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goal is simply to make connection feel a little safer and a little more possible again. So,
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strategy one. Create one migraine-safe form of connection. So, choose one form of connection that
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asks very little of you. It could be a 10-minute phone call. It could be a voice message. It could
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be a friend coming over for 20 minutes without expecting to be entertained. It could be sitting
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beside somebody quietly. It could be writing a letter to someone. Or it can be simply saying,
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I would really love to see you, but can we keep it short and flexible? The important thing is to
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stop measuring connection by how long it lasts and how much energy you bring to it. Small connection
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still counts. You do not need to be symptom-free to deserve companionship. And you do not need to
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turn every moment of connection into an event. There's something I'd like to share with you.
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After 11 years of living in New Zealand, my family and I have moved back to where home is naturally
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for me. That is Belgium. And so, it's a really big deal for us. And I will probably share more
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about it in later podcasts. But one of the reasons I'm so excited is that a lot of my team is based
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in the European time zone. And this worked really well because this is my vocation. And I want to
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bring so much of my energy and productivity as I can for it. For years, I was living almost the
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opposite side of the world. And it was complicated with many of the people I work with. So, the move
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happened quite abruptly. And because it took us a long time to make the decision. And then once we
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made it, everything happened really suddenly. And I was leaving. A few of my friends said to me,
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oh, this is so sad. You know, I'm heartbroken. Some of them cried. And I feel you're leaving me.
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And I said to them, I don't really look at relationships that way. And they were like,
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what do you mean? For me, connection has five dimensions. There's the three physical dimensions,
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like being able to see you, being able to sit beside you, have dinner together,
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bump into you casually. Of course, when you move across the world, you can lose some of that.
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But then I think of a fourth dimension, which is a digital connection. And there's a fifth dimension,
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which is sometimes harder to describe, but perhaps a bit more spiritual,
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feeling that somebody is deeply present in your life, even when they are nowhere near physically.
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And because I have lived in quite a few different places, I have actually nurtured some of my
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deepest friendships while being completely physically separated from the person. And one
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thing that I like to do a lot is a digital walk. So, I go for a walk and I send the friend a long
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voice message on WhatsApp. I just talk to them as though they were walking beside me. There's
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no pressure for them to answer immediately. They listen when they have some downtime. And perhaps
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during one of their walks, or their quiet moments, they send me a long message back,
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or a couple of ones. And I have found this extraordinary. Some of those friendships have
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become profoundly deeper because of it. There's something about having the space to really speak
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without rushing, and then giving the other person the space to really listen. And from my own
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experience, I really encourage you to try it. Take somebody you care about with you on your next walk.
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Even if they're not physically there, send them a voice message. Let them answer in their own time.
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And you might be surprised by how deeply a friendship can grow, even though two people
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are just really far apart. And so, it's much less taxing. It means you just need also a couple of
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minutes to feel well and be well. Okay, enough about this one. Let's move to strategy number two.
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Tell people what support actually looks for you. So, people who love you are not necessarily going
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to know what you need when migraine hits. So, make it easier for them. Choose three very concrete
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things that help you. Perhaps, check on me once, but don't keep messaging. Or, please help with
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dinner. Or, sit with me, but I may not be able to talk. Or, if I cancel, please don't make me feel
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guilty. Or, ask me again next time, even if I couldn't come this time. Then, share those things
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with one person close to you. You're not asking them to fix your migraine. You're simply helping
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them understand how to be beside you when it's hard. I also want to share a story here. I had a
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woman. I think she was based in Canada. She and her partner had done therapy, couple therapy,
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to help her deal with her migraine. I find it really interesting. It's the first and only time
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I heard of it, but I thought it was really smart. Strategy three. Choose good company. So, there's a
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beautiful idea in Ayurveda and Indian philosophy called Satsang. And it can be loosely understood
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as being in good company or in the company of what is true and what is nourishing. And I think
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this is particularly important when you live with migraine. Your goal is not necessarily to have
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more people around you. It is to have safer people around you. People who believe you. People who do
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not punish you for cancelling. People with whom you can say, I cannot talk for very long today
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without needing to justify yourself. People who can adapt a plan rather than making you feel that
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you ruined it. People around whom you can still feel like yourself rather than feeling like the
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migraine is the only thing they see. So, think about the people in your life and identify just
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one person who feels like that and reach toward them today. One message. One voice note. One small
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moment of contact. You do not need to rebuild your entire social life. You're simply creating
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one small opening back toward the world. That's all for today. I hope this episode
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added another piece to your migraine puzzle. If you'd like to apply what we've discussed to your
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own life, you can find us by searching Migraine Heroes in the App Store or Google Play. Look
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for the green icon with the love heart in the brain. Migraine is complex, but it's not random.
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And every step forward brings us closer to lasting relief. Your body has a story to tell.
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Let's keep listening. I will be back with you soon.
