Alone in a Sea of Millions

Alone In a Sea of Millions

I can almost count the people I know in real life who have migraine on one hand. A cousin, an aunt, a neighbor, my father-in-law, a mom of my son’s friend, and a fellow volunteer board member. Given the fact that more than 36 million Americans have migraine, it’s striking that I only personally know a handful of people who are living with the condition. Yet I’m hardly alone in this dynamic. Even though migraine is incredibly common, we don’t generally encounter migraineurs in our everyday lives, at least knowingly. So, when we find someone who is managing life with migraine, it can be an incredibly relieving and affirming experience.

Isolation

Why is it that so few of us are connected in real life? Primarily because the condition is so isolating. Migraine keeps us at home, in the dark, staying quiet. We generally are not out and about shouting from the rooftops about the challenges we face. Instead, we are busy responding to pain, managing related symptoms, and doing our best to take care of the rest of our responsibilities. We are also often sidelined from our careers, and absent from social and family gatherings. So, the opportunities to connect in person are few and far between. Some people with other types of medical conditions may rely on support groups, but with regular meeting times, the difficulty in attending such groups is obvious for migraineurs.

It is easy to feel alone and misunderstood as we maneuver through life with migraine. If we know no one else with migraine like us, it can be easy to feel that no one really comprehends what we face. Even the most compassionate person in the world can’t really grasp what migraine is like if they’ve never had one.

Not on my worst enemy

My husband is one of those people who is brilliantly and endlessly compassionate but is lucky enough to have never once even had a headache in his life. I’ve wondered if his experience of an attack would help to deepen his understanding of what I’m up against, but I honestly would never wish the condition or the pain that comes with it on my worst enemy, much less my loving husband.

A beacon of light

At a recent large gathering of friends and family, I met a woman who lives with chronic migraine. It was a wonder that we both had made it to the annual event (one that I have missed countless times before due to chronic migraine). Although we talked about our lives, there was no need to go into great detail about the specific ways migraine is hampering how we live. It was enough just to know that we are facing the same challenge. We noted that we’d found each other in the quietest corner of the room. Life with migraine can bring with it the constant sense that we must educate others about the condition – or be ready to explain why we aren’t working. So often we must defend ourselves against an insensitive comment or question. It’s a profound relief to find someone who “gets it” without having to explain a thing.

Something very special occurs when I encounter someone who lives with migraine. Whether online or in real life, there is an immediate connection and understanding. Each migraineur I meet is very special to me. I hold them near and dear to my heart because I know what they are up against and they accept and understand who and where I am. When we spend so much time feeling isolated and alone, these connections are especially nourishing and important.

Do you know others in your life who have migraine? Has connecting with others been a helpful experience?

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

View Comments (22)
  • DinaMay
    7 months ago

    Recently I’ve met so many people who are either migraineurs or have a friend or relative with migraine. It’s amazing to me. But even before this latest development, I knew of fellow sufferers. My paternal grandfather was said to have had severe headaches that would keep him in bed for hours or even days. Sounds like migraine to me. Then, most unfortunately, my daughter has migraines. I’m so sorry to have passed that on!

  • Holly Baddour moderator author
    6 months ago

    Hi @dinamay– I share that experience of having a paternal grandfather who was known to call for a dark and quiet house for hours and days. Migraine wasn’t a term that was used back then, but looking back it certainly makes sense that he must have been wrestling with the disease.

    So sorry to hear about your daughter. I have a son who has migraine as well. It can bring upon a terrible sense of guilt when our children inherit this disease. That said, we know it’s not our fault, in the same way that our grandfathers would never have wished for us to have experienced this condition either!

    Thank you for sharing and so very glad you’re a part of our community.

  • Luvmyfam22
    1 year ago

    I can so relate to this entire conversation. I am typically a go getter…every moment scheduled…and lovin’ it! My husband would have to beg me to just let this or that go and rest, but no I could do it all, including a full social life and amazing relationship with my two now grown kids. When I retired a few years ago, oh the plans I had!!! I feel like the carpet was just swept right from under my stable footing, or so I thought! What happen to my safe, happy, social, intake world…whisked away by ever increasing migraines. I thought the occasion 3-4 a month were unbearable, well now that MIGHT be the days I am free of migraine pain or symptoms…what happened to my life? My husband tries so very hard to understand, but in truth, he really doesn’t. I think he thinks if he, I, will them away, I just try harder they will just go away. There are those moments he is so compassionate, and then the contrary statement pops up of why I have not accomplished or completed some menial task, or I may get a grunt if I ask for help with a chore I cannot complete. But, then I try to remember that we had a full life TOGETHER, and this loss is not just mine it is his as well. This is a new frontier for the both of us. I need to be just as patient with him on this companionship train as I want him to be with me as we learn together and then I know my battle with feeling alone will dwindle!! My HOPE is not dead yet. Migraines may have taken taken my head captive, but I will not hand over my hope!!!
    Thanks for the rant…boy do I feel better!!!!!

  • Holly Baddour moderator author
    1 year ago

    @luvmyfam22 – thank you so much for sharing some of your story. It is one to which many of us can relate, I’m sure. The pull-the-rug-out-from-under-us-feeling that happens when episodic migraine morphs into chronic migraine is one you describe perfectly. It happened to me a decade ago and was a shock to me, my husband and our children (not to mention my friends and extended family). Where did I go? Who did I become? Once a career driven gal, now unable to work and in so many ways sidelined from life. A real whiplash that requires a journey of adjustment for all those affected. Wonderful to still have your hope! And to remember you’re not alone in this- your post helped others remember that they are not alone. So glad you’re a part of our community. Stay in touch! Warmly, Holly B. (migraine.com team).

  • susghost017
    1 year ago

    This article hits it on the head-so to speak – We moved to a different part of the Country shortly before my migraines became really bad. As a result I have found it difficult to make new friends, volunteer or become involved in the community. This disease is so isolating and there are no local support groups as a vehicle for meeting others. If it weren’t for my sweet patient husband,who has never had a migraine but cares for me vigilantly, I would be really alone without sites like this. Thanks for the support and information

  • Holly Baddour moderator author
    1 year ago

    @1ssj5c0 – I’m so glad you spoke up so I can remind you today that you are not alone and that we are so happy you are part of our community! We are all here together, trying to navigate this messy and challenging disease and it’s so important that we do so with linked arms. Please visit these pages, go to our facebook page frequently so you can be reminded that you are part of an enormous community of people just like you. It’s too hard to show up for support groups in person because migraine makes following through so difficult- but this site is always here. We are always here – to give support, guidance, and a virtual hug. Wonderful, too, that you have a compassionate husband! That can make such a difference. Please stay in touch. As I write you, I’m currently sitting at a way too noisy cafe with a hat on to block the light as I wait to meet a friend. This will likely be all I’ll be able to do today- but I’m glad part of my day has meant connecting with you. Warmly, Holly B. (migraine.com team).

  • susghost017
    1 year ago

    Holly- Thank you so much for your response. Just that has really served to brighten my day considerably! I’m looking forward to warmer weather when i can at least spend some time- with sunglasses and hat outgetting some exercise and seeing nature ‘s changes. Meanwhile I will take
    advantage of this group ‘s
    generous offer to participate when I can. I find the articles to be very useful and informative. Regards to all the M.c team – Sue (1ss5jc0)

  • Running49
    1 year ago

    I have only ever known a handful of people with migraines and none of them had migraines that confined them to their room for a week with severe pain and constant vomiting. I felt so isolated. When I was contemplating ending it all after yet another week in bed I put out a desperate plea on a local chat site to see if there were others like me and only one person responded. However, that one person changed my life! She told me about the medication she was on and I asked my doctor for the same medication and I haven’t had a migraine since. I wouldn’t be here if it wasn’t for her. I am so happy now. I really hope others can find the right help too, my doctor was useless!

  • Holly Baddour moderator author
    1 year ago

    @running49– what a beautiful story! Tremendous that you were able to find someone who offered such a great solution and ray of hope just when you needed it! Beautiful story that offers hope to the rest of us. It’s always important to reach out to others, especially in those lowest-of-low moments. Glad you shared such an important experience with the rest of us. Warmly, Holly B. (migraine.com team).

  • mrst53
    1 year ago

    The only people I know with migraines, are my relatives and my husband has cluster migraines. Until he had one, he could not understand what I went thru. He thought I was making up the pain. I think the reason, we know so few people with migraines, is that even tho it is a disease, there is a stigma about it, and most people will think that NO HEADACHE CAN BE THAT BAD.

  • Holly Baddour moderator author
    1 year ago

    I couldn’t agree with you more, @mrst53 – Thank you so much for sharing your experience. The combination of people not be able to comprehend this level of pain AND the stigma that continues to be tied to the disease are huge reasons that people don’t run around identifying as having migraine. I thought I’d send you a link to one or two articles on the topic of stigma, but we have such a treasure trove on the topic (because it’s such a major one) that I’m sending you to the link that shows all of our articles on the topic! Enjoy! Thanks again for joining in the conversation! Glad you’re here. Warmly, Holly B. (migraine.com team).https://migraine.com/?s=stigma&submit=Go

  • bethk
    1 year ago

    Thank you Holly.
    I can relate to your article , hate that you suffer but grateful to connect.
    Sometimes I feel like I’m imagining it or just a whimp.
    I’m just coming off a two day bad migraine, grateful to feel human again.
    My husband is also very compassionate when I’m down with migraine.
    For now, I’m relieved, hoping it never returns.
    Thank you
    Beth

  • Holly Baddour moderator author
    1 year ago

    hey @bethk – so grateful to connect with you as well! The disease can bring us to our knees and leave us questioning ourselves. There is nothing like the feeling of emerging from a days-long attack. It’s almost like awakening from a strange dream (or nightmare…)- here’s an article about the cycle of getting hit and emerging over and over again: https://migraine.com/living-migraine/wegetknockeddown/ So glad you’ve got a great source of compassion in your husband- it can make a huge difference to have that kind of support. Glad you’re a part of our community- please stay in touch! Warmly, Holly B. (migraine.com team).

  • mbabi1970
    1 year ago

    Holly, your articles resonate with me so deeply and I just want to say thank you for sharing and truly making me feel normal, well chronic migraine normal. It’s always so great to be able to make an event and not have to cancel. It’s only recently in my 10 year journey that I have come to truly appreciate and be grateful for those very few but wonderful moments or hours. Your writing is inspiring.

  • Joanna Bodner moderator
    1 year ago

    I absolutely agree with you @mbabi1970! Her writing is always so inspiring, uplifting, kind & supportive! So happy to hear that you too enjoy it just as much! It is so lovely to read that although you have had such a long journey that you have reached a place that has enabled you to focus & cherish those special moments. Warmly, Joanna (Migraine.com Team)

  • Holly Baddour moderator author
    1 year ago

    @mbabi1970 and Joanna- aw shucks, guys- you sure are sweet. Thanks for the very kind words. mbabi- I’m so glad my writing resonates with you- I have a feeling we share a lot in common. Although I’ve had migraines since I was 6, I’m closing in on 10-years with them as chronic daily migraines as well. It’s a long journey. I’m so glad to ‘know’ you and that you’re a part of our community. Stay in touch! Warmly, Holly B. (migraine.com team).

  • David
    1 year ago

    I agree, but there are other issues folks don’t talk about, e.g., diarrhea. I have found many migraineurs because I teach college and ask, “How many of you here have Migraines?” I usually get one or two in a class of 25 who have “migraine with aura” the type I work with.

    The only other time I learn someone has migraine is if I’m with them and they excuse themselves because they have a migraine.

    I believe the stigma of (it’s all in your head–true in that the pain is in the head) keeps folks from being open.

    Thanks for the post.

    David Skaer “migraine with aura” person

  • tawnycat
    7 months ago

    I agree about the diarrhea! I don’t find much about it.

  • Holly Baddour moderator author
    1 year ago

    @davidskaer– you are SO right that the stigma against people with migraine is still very alive and well. This is indeed what drives many of us not to announce the fact that we have the disease to the world. It is seen by many as a weakness- and by others, still, as something that is being faked in order to get out of life’s demands. A crazy-making theory. I love that you are doing what YOU can to address the stigma by asking students to be open about the condition and taking the lead in your position as an educator. That is wonderful to hear and I hope more people will follow your lead. By doing so, you are educating others about its prevalence and laying the groundwork for acceptance. Thank you! Warmly, Holly B. (migraine.com team).

  • John1381
    1 year ago

    All so true for me too. Not having to explain how and what you are feeling is rare and such a relief when you meet someone in a similar position, it is quite emotional at times. I feel the same when I read other posters stories on this website, which I find extremely valuable. The isolation of this illness is something I hadn’t anticipated. I made it to my nieces birthday yesterday, my first trip out in a long while, I had to leave after two hours and had the terrible feeling that I will hardly see her again when leaving. It was sickening, however, we try too keep going.

    Strength to all.

    John.

  • Holly Baddour moderator author
    1 year ago

    Hi @john1381 – thank you so much for sharing some of your story. I’m glad this article resonated with you and I agree this site is capable of doing worlds to connect us and decrease the sense of isolation that so frequently accompanies migraine. While I completely (like, really) relate to the experience you had of having to leave your niece’s birthday party early, I might push back a little on your take away from that experience. Of course we are heavy hearted when we can’t fully participate in the milestones of life, but getting there at all, and being there for 2 entire hours, is a huge feat! You were there! That’s tremendous in itself. I hope you will try focusing on the fact that you were able to show up in the first place. That effort is huge and one that many of us can no longer do. And when we can’t, we have to think of other ways to be there- to be present in the lives of our loved ones– be it facetime, or through sending handcrafted cards, etc. I’m not saying it doesn’t suck, it does, but as a fellow migraineur, I’m impressed by what you accomplished and, despite the extreme pain that comes with migraine, it shows the effort you make and the love you have for your family. Very warmly, Holly B. (migraine.com team).

  • John1381
    1 year ago

    That is such a kind reply, thank you so much. You are right, I should focus on that I got there. You have helped me enormously today, I hope you get the respite and help that you need too.

    Thank you again.

    John.

  • Poll