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Migraine & Empathy: Why It’s Hard for People to “Get” It and How to Help

Describing how disabling migraine attacks are to someone who doesn’t understand migraine can border on impossible. You know the responses: “It’s only a headache,” “Think positively and your migraines will go away,” “You just need to work harder at having a life and then you’ll feel better.” We live in a culture where illness is something to be triumphed over, where the power of positive thinking is confused with magical thinking, where people are praised for not letting illness slow them down. Debilitating illness is not in our society’s vocabulary.

An illness like migraine has the added obstacle that non-migraineurs think they know what it feels like. Headache and migraine are used as interchangeable synonyms. Because someone knows what a headache feels like, they assume migraine pain feels the same or maybe a little worse. Even those who grasp that head pain is not the only migraine symptom have trouble understanding how debilitating those other symptoms can be and that the pain itself is often excruciating.

Although I’ve always understood that severe head pain is miserable, I haven’t always comprehended how ravaging illness can be. Before migraine became a daily fixture in my life, I had a constant headache that I stubbornly ignored. I’d lose a few nights a week to “bad headaches” and occasionally miss several days (or a week) of school or work with a mysterious illness that caused massive nausea and dizziness, but mostly I pushed through out of sheer will. This was my paradigm of illness (though I didn’t even think of it as illness then, it was just normal) and, despite being a fairly empathic person, I couldn’t understand when other people’s activities were curtailed by illness.


During this time, I went shopping in Mexico with a loved one who had breast cancer. When she declared she was worn out after hours of shopping, I wheedled with her to let me check one more store for the Mexican vanilla I so love to bake with. She was reluctant, but I cajoled and she acquiesced. I knew she was sick and tired, but I had absolutely no idea what she felt like. I only knew that I pushed through pain regularly and assumed anyone else could do it, too.

I cringe now at how I ignored her expressed limits and insisted on getting my way even though she was exhausted. I didn’t invalidate her needs intentionally, but because it was the only thing I knew to do. Everyone assumes other people have the same physical abilities they do. Even if those abilities are diminished, like mine were regularly around the time of that shopping trip, it is difficult to imagine a physical experience that’s not identical our own.

This story comes to mind when I hear of someone whose friends or families say something crass or ignorant about migraine. They simply don’t get it. Putting yourself in someone else’s shoes in always hard. That exercise is doubly difficult when you’re trying to imagine not only an unfamiliar physical experience, but the restrictions that experience imposes. For some people, it’s utterly unfathomable.

Being a writer who has chronic migraine has lead me to a career where I spend most of my time trying to help people “get” that migraine is real, serious, and often debilitating. Migraineurs regularly ask for advice on how to deal with the people in their lives who don’t understand what they endure or who are downright rude. There is no simple way to imbue others with empathy, but acknowledging what you’re going through is a good place to start.

You’ll probably balk at that idea. The stigma of migraine is so great that many migraineurs shroud their illness in secrecy and shame. Until just a few years ago, I tried to hide my experience from everyone, including my husband. I’d write about some of the turmoil on my blog, but even then I was guarded. I never wanted to complain and hated the idea of anyone pitying me or thinking I was weak. To my astonishment, opening up to others has only increased their respect for me. People do not pity me, but are astounded by my strength. In turn, I am amazed by the depths of their compassion.


Being open about migraine is not easy, but it can reap tremendous rewards, both in your personal life and, ultimately, in furthering the general public’s understanding of migraine. You don’t have to let it all hang out; in fact, I recommend revealing a little at a time so you’re not overwhelmed by vulnerability.

If you’re worried about sounding like a complainer, think about ways you can acknowledge the truth without whining. When people ask how I’m doing, I don’t launch into how horrible the last migraine was and that I feel isolated. Instead, I say, “It’s been a hard week” or “I’m still recovering from a terrible migraine,” then gauge their responses. People usually ask what’s going on and I give a little bit of information at a time, letting the questions they ask guide what I say next. No one wants to be hit with an onslaught of complaints, but most are genuinely curious to know what having migraine is like and the people who love you want to know what’s happening with you.

Maybe you’re not comfortable with — or don’t have the physical and emotional energy for — explaining migraine and what it means in your life. If that’s the case, when you come across a post or article that touches you, try sharing it with a short note describing why. Maybe you’ll share with everyone you know on Facebook, or email it to your closest friends, or ask your partner or parent to read it. Every small step is move toward greater understanding.

You don’t have to shout to the world that you have migraine and it is giving you a hard time, but no one can have empathy for you if you don’t allow them a glimpse inside your life. Sharing your tribulations and pain are difficult, but breaking the silence and shedding the shame surrounding migraine are vital to reducing its stigma, both personally and in society in general.

While doing so has sometimes been terrifying and painful, I’m relieved to no longer be trying to hide a major part of my life from everyone around me and have regained some of the control that I thought migraine had wrested away. The resulting stronger faith I have in myself and my own experience, my improved relationships, and the sense of empowerment have been well worth the emotional risk.

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

Comments

  • Selena Marie Wilson
    1 year ago

    This is eerily parallel to my experience.

    If you’d told me 6 years ago that chronic migraine existed and could be like this pale existence daily, I’d have been hard pressed to believe it – even having been episodic most of my life.

    I didn’t get it…until I got it.
    Literally.

    People often can only imagine from their own frame of reference, which doesn’t usually include any form of chronic illness.

    An illness people THINK they understand is even harder to rethink for most; I had no idea how many of my own ideas about migraine were wrong, or even dangerously wrong.

    I’d say thank God this disease taught me otherwise, but that would be hypocritical. I’m not grateful for its appearance in my life.

    I AM glad I learned better, and that it moved me to advocate…but what I wouldn’t give to be living my old life.

    My consolation is that I’ve helped others. In that, I take some measure of peace.

  • Luna
    3 years ago

    I can handle the people who don’t experience migraine to not understand. What I really dislike is for other migraineurs to dismiss us because our experience isn’t as bad as theirs or what ever else silly excuse they have. It really irks me no end when I read those comments on this site.

  • Myriam De Nijs
    6 years ago

    Dear Kerrie,

    Your story is so recognizable to me and to many other chronic migraineurs. I admire your courage to help others to understand this illness.

    Sometimes it’s a struggle for me too to cope with people who don’t understand, who tell me: ‘Oh, it’s all between the ears!’ It hurts, because it sounds like: it is all imagination!’

    At present, I’m following a new treatment (again, and again trying to end the nightmare!) and the stage I am in now is the ‘rehab’: quitting all ‘dangerous’ painkillers like Excedrin (and Perdolan compositume = nearly the same as Excedrin, but in a lower dose).

    After years and years of trying to live with the pain, it’s the first time I’m trying to get through the day without ‘the forbidden’ painkillers. The neurologist gave me Redomex and my nights are so peaceful now! In the morning I take a very small dose (1 mg of ergotamine).
    The only painkiller I am ‘allowed’ to take is paracetamol Forte= 1 g). It helps me through the days but I have to cancel nearly any appointment, activity. Christmass is approaching and I am so afraid to accept invitations for family reunions. Because my big fear is, of course, a real mega-migraine-attack!

    So the last weeks I’ve spent doing calm activities like: walking the dog, a bit of reading, a bit of computer, a bit of television, a bit of phoning. Little bits, nothing more!

    Some years ago, I participated in a tv-programme which was meant to explain migraine to healthy people. It cost me a lot of energy and … migraine, but for me the cause was very important! It was also meant to explain the disease, in order to encourage younger people to stop selfmedication and to go to a neurologist, in order to take preventive migraine medication instead of ordinary painkillers.

    I received lots of reactions, most positive! Some people told me: ‘I can not imagine how it feels, but I do understand better now what you are going through!’.

    What makes me sad the most: people, even with very occasional attacks, understand easily, because they remember the nightmare, some people without migraine TRY to understand and feel empathy … and some feel nothing and classify you as ‘a rare species’.

    I am happy to meet people like you, Kerry, who, despite their suffering, try to help others to understand!
    I am going to share your article to my family and some friends!

    I wish you a fine painless Christmass time and hope to read you here again!

    Greetings and blessings from Antwerp, Belgium

    Myriam

  • Dawn
    6 years ago

    Thank you for sharing. I just found this site and already have shared a lot with my friends/family.

    I’ve been dealing with migraines/headaches for 8-1/2 years now. I have a neurostimulator implanted and need the one that will help in the frontal area.

    Some of my family members just do not understand the pain that I go through. Their remedy is 1. take some meds and get over it and 2. you’ll still hurt regardless if you’re laying in bed or getting up and doing things. I’ve lost relationships (family/friends) over the years because they just don’t get it and don’t want to understand. It’s frustrating and it hurts to know they just don’t care. I can honestly say even my marriage suffered because of my illness and we’re now divorced.

    So again, thank you for educating those of us that suffer and helping us feel that we’re not alone in what we go through. Hopefully one day people will be more empathetic and can understand a bit more!

    Keep Smiling,
    Dawn

  • Kerrie Smyres moderator author
    6 years ago

    Thanks for your kind words, Dawn. I’m glad my posts are helpful for you, though I’m sorry to see you’ve been struggling so much. Hang in there.

    Kerrie

  • Janet
    6 years ago

    I truly mean this with all my heart Kerrie. I love you for your passion to educate both migraine and on migraine readers.

    My family is tired of me and migraines and they are the ones who really need to see this articles. I gave up sharing.

    Blessings
    Janet

  • Kerrie Smyres moderator author
    6 years ago

    Thank you, Janet. I’m sorry you’re having such a tough time with your family right now.

    Kerrie

  • Niso
    6 years ago

    Hi Kerri and all who reads,

    your artices are realy touching, “if only they can feel just to understand my acts” that’s what always i keep thinking of while i have my migraines.

    I’m no longer ashame of it and i don’t intentionaly hide it, but most problem i face is within me that i barely can express my feelings, not easy to say HAY I’M IN PAIN.. every day i’m in pain but in different levels, i hate to sound as complainer. I should open my mouth to let them understand but I can’t not that easy.. talking about brings to me more pain.

    As what LARISSA said above about empathy, i used to say migraines are painful but made calmer and relaxed person, a person who count/think before i speak loud or get angry. It made smoother person with more open minded, yet the problem now that with time this pain turned me to colder person… barely i feel others… barely i care.. barely i feel what’s around me. Realy it’s a big lose of my own empathy!!

    thank you for this article…

  • Kerrie Smyres moderator author
    6 years ago

    Thank you, Niso. I’m so glad my writing is helpful for you, though I’m sorry that you’re struggling so much. I totally agree with what you’re saying — chronic migraine demands so much attention and energy that educating (or even interacting with) others is a majorly low priority. There were years where all I could think about was keeping myself alive. That may sound melodramatic, but is unfortunately completely honest. Finding effective preventives and ultimately decreasing the severity and frequency of my migraine attacks is the only reason I’ve been able to engage with the world again. Best wishes for you in your search for effective treatment.

    Kerrie

  • lara
    6 years ago

    My original college major was nursing but shortly after entering the nursing program I left because 1. the stigma against migraine patients was unbelievable (it was ’98 and all were drug seekers or just “problems”) and 2. I had lost any and almost all empathy I had because of the lack of empathy I generally received with regard to my own migraines.

    I only recently starting working on regaining my empathy for others. It is a terrible thing to lose.

  • Kerrie Smyres moderator author
    6 years ago

    Larissa,

    Interesting that you tie your lack of empathy to other people’s lack of empathy for you. I’ve lost some of my empathy for others recently and want to explore whether this is the case for me as well. I have, however, developed more empathy for myself for the first time in my life. My therapist suggested that people have a finite amount of empathy and that I’m adjusting to this new balance. Any chance that’s what you’ve experienced?

    Kerrie

  • Janet
    6 years ago

    I am where you are Larissa…and it isn’t a particularly great place to be…but, as you say, neither are we…

    Blessings
    Janet

  • Krista
    6 years ago

    Thank you much for sharing. I’ve been struggling with chronic migraines for several years. I’m on disability, in part, due to this. Thank you for this helpful article.

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