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The Isolation of Chronic Migraine

The Isolation of Chronic Migraine

The most painful, nauseating, and vertigo-inducing migraine I’ve had in months coincided with an overnight visit from a good friend I haven’t seen for four years. He, my husband, and another couple went to dinner, then came back to my house so I could spend time with them. Even though my friends literally surrounded me, standing in a circle around the sofa I sprawled out on, I was overwhelmed by a sense of isolation. I felt like I wasn’t actually there, even when I made eye contact or spoke. My friends and husband did nothing wrong, nothing to exclude me. The migraine had drawn me so deep inside myself that I couldn’t connect.

I decided I was best off in bed. Washing my face and brushing my teeth required such monumental effort that I didn’t even get to say goodbye to our guests. I barely made it to bed, then was wide awake, thinking about how incredibly alone I felt. The isolation gave me a sense of physical emptiness. It was as if I wasn’t even there — like my essence (or soul, if you please) was missing. Like I was in this experience of migraine entirely alone and not even the people closest to me could touch me physically or emotionally.

Even though I’m extraordinarily fortunate to have family and friends who try to understand the impact chronic migraine has on my life, there are so many things they don’t think of. Like that I can’t always sit at a noisy restaurant and be in their presence even if I’m heavily drugged and catatonic. Sometimes I can, but, like when our friend was visiting, sometimes I can’t be upright for more than a couple minutes without blacking out. Or that running an hour late can mean the difference between me being engaged in the conversation and hidden in my bedroom.

Of course I know I’m not alone. From the moment I first discovered a migraine forum in 2004, I’ve been aware of the vast number of people who also live in chronic migraine. The most startling part about our experiences is their similarity. I’ve even become friends with some of these folks “in real life.” Knowing other chronic migraineurs is an immense comfort to me. Yet it doesn’t keep me from feeling like I don’t fit in normal life.

I saw my friend very briefly. I squeezed his hand because I couldn’t get up to hug him. I congratulated him on his recent engagement. I got to see that he is over-the-moon in love. When I put a positive spin on the night, I’ll be happy I got those moments of connection even when I felt awful. When I’m angry and feeling like this illness is desperately unfair, I see just how much of life I’m missing out on.

Usually I find solace in the knowledge that most of my friends will be here for me when I’m able to engage in the world again. Right now I’m acutely aware of life moving past me, of my friends making memories together while I lie in the dark, alone.

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

  • tinyhiker87
    1 year ago

    I just wanted to offer you my compassion and tell you that I am so sorry that you are in that place right now. I know how you feel, (alone) unfortunately all too well. I hope you are able find some relief and want to let you know that you are not alone, because of the wonderful people we have here in our migraine community. I am here for you if you need a friend to talk to when you feel alone because of your migraines. Feel free to pm me anytime. We are all in this together! *Hugs* 🙂

  • michelm
    2 years ago

    I so relate to how you are feeling. There are times when I feel that there is a wall of silence between me and the world. At best, I know that they are out there. I go through ups and downs of migraine control. I’m also asthmatic so control there can also be an issue. I retired 3 years ago, 1 year early due to a car accident and since then have lived the life of a single hermit. Friends think there is something wrong with me. What they mean is emotionally. They cannot accept that migraines/asthma would have someone housebound. The gift is, I think this is all starting to shift again. Winter is always a better time, no pollens to deal with and I live in the land of snow and ice. So pray for cold. All the best to you my friend.

  • aks868
    2 years ago

    Thank you so much for your article. I am writing this at 5:30 in the morning after being up all night with a migraine…and tomorrow is the Jewish New Year, and I have to decide: Do I go to Temple or go to the family dinner in the evening, because I know both will be impossible? And both are so important to me, to be part of my community and part of my extended family. Either way, I have to be alone for part of this important day. The worst is that yesterday I knew I was getting one but carried on as if I were not and am now wondering if I could have stopped it…drank more water, did not exercise, did not have the small glass of wine at my other festive family dinner, didn’t eat dessert…but then I realize that it started at 5 yesterday morning, so really there was nothing I could do. So, that feeling of isolation that you talked about is starting to creep in. Sometimes it feels as if the migraines encircle you in a way that makes the world hard to hear and relate to, as if everything is muffled by the pain and discomfort. Nevertheless, I still have hope and still try to focus on how connected I was yesterday despite the prodrome. Thank you so much for putting into words how so many of us feel.

  • Selkie
    2 years ago

    I want to add that (sorry this is negative but lol) sometimes the idea of “educating others” is something I just don’t want to deal with. Educating others about migraine is one thing, but educating empathy is impossible. It’s there or it isn’t. And I work in healthcare. I “shouldn’t” feel this way. When I have migraine my priority is taking care of my family (the very basics) and taking care of myself. Family is understanding. As to employers, the world at large, friends… they either get it or they don’t. Usually employers don’t. We do need more public education. Just not sure it’s a burden I want, when I’m the one sick. Think of it- what other condition do we impose on the patients, “you must educate the public about your condition so they don’t judge you?” There are definitely many misunderstood conditions, mental health conditions, fibromyalgia, etc, the list goes on. But I don’t see the onus put on those patients to “educate the public” that they are “really sick” and not making things up. I guess, who else is going to do it.. but wow. Even healthcare employers just do not get this. I suppose my level of caring about this varies as to frequency of migraine (less migraine and higher tolerance for BS) but we should have the privilege of caring for ourselves, without being judged by the public, friends, family etc.

  • Cerys
    2 years ago

    This article was written over four years ago and I don’t really see any more public understanding of migraine now than then. I’m pretty much a recluse at this point due to a combination of painful health conditions including chronic migraine. My neighbor saw me outside and came over to ask how I’ve been then proceeded to joke that I’ve been “high” in the past. I wanted to correct her – it’s not meds but the stroke-like effects of migraine creating that impression – but she’s set in her way of thinking and I was Just. Too. Tired. So I really relate to what you said about not wanting to deal with education of others :0 Sometimes they just don’t want to learn and the effort required to combat their misconceptions (or dogmas) is more than I can spare. Sometimes I have a bit more spunk (or anger-fueled adrenaline) to challenge folks, but mostly, not. I do wonder the role of “awareness fatigue” in today’s general lack of empathy… That and the current push to prioritize health economics. People really buy into the “cost to society” b.s. then resent those who are “sick” and look for reasons to blame them for their conditions then shame them into not being such a burden. Ugh. Thanks for posting & rounding out the discussion 🙂

  • John1381
    2 years ago

    An excellent article and responses that resonate so much with me. 276ewea your comment ‘Think of it- what other condition do we impose on the patients, “you must educate the public about your condition so they don’t judge you?” really made sense to me, I am tired of explaining my condition it feels so hopeless at times. I will keep trying but it’s good to vent a little on this life saving website.

    Regards,

    John.

  • DonnaFA moderator
    2 years ago

    I absolutely hear you, 276ewea, and I agree. I actually don’t think it’s negative at all. I think we should be able to count on the empathy of people we encounter, and I believe empathy should be our first reaction to the people we meet. Thanks for sharing your thoughts! -Warmly, Donna (Migraine.com team)

  • Selkie
    2 years ago

    Well written article, very much articulates what a lot of us are feeling, I see by responses. Usually when a 3 or more day migraine bout is over for me.. suddenly it’s over. I do get postdrome symptoms like fatigue etc but the pain has lifted and I realize am returning back to life again. If I’m not careful it can return, but there’s still an enormous sense of relief and almost euphoria. At that point it also becomes clear that I’ve essentially “lost” a block of time in my life, it’s as if I’ve been literally gone for 3 days. Not gone like on a trip, but as you say, invisible. Sorta like Persephone in the underworld, returning to life. Disappeared. I try not to go too deep into that feeling at that point because am so grateful its over. Yet still it’s a cumulative loss over time. A lot of time being “gone.” No wonder it’s now considered one of the most disabling conditions. Thanks for describing this so aptly. When I’m in migraine mode there’s no way I could interact with people, I need quiet and dark and no stimulation or it gets worse.

  • Julie
    2 years ago

    What an emotional post that hit so close to home. The part where you were describing the experience of feeling entirely alone and not even the people closest to you could touch you physically or emotionally. The emotional detachment has become very prevalent over the last six months or so and I’m finding that I’m becoming more sensitive, almost irritated, to being physically touched during the migraine. The more detached I become, the harder it is for me to explain to my boyfriend. He is so great and supportive .. I’m very lucky !! But understandably, it’s hard for him to not take some of this personally. I try my best to explain, but end up feeling like I’m letting him down too. And at the end when you talked about life moving past me, that’s when the tears started because that’s precisely how I feel. When am able to get together with friends and everyone is talking about what’s new with them, I have almost nothing to contribute to the conversation. They are all very understanding and supportive of my chronic migraine situation, but life does go on and I feel like I’m being left behind. Thanks so much for your post today just to give us a reminder that we aren’t alone out here .. I look forward to your posts, as they usually hit very close to home for me and I always seem to feel better after reading them !!

  • skatoulaki
    2 years ago

    This is how my life was from age 11 up to age 37 when I was finally diagnosed with chronic migraine. Like others, I have no clue how my husband dealt with me for the years when I would be bedridden and in complete darkness for at least 2 days vomiting into a bucket…he is a saint! My migraines lessened a bit when I went on blood pressure meds, and then my neurologist found a solution that works for me about 98% of the time.

    I’m 50 now and still have daily headaches, but they’re manageable. Rarely a full-blown debilitating migraine anymore, though my meds do make me a bit “out of it,” so there’s still the disconnect at times when I decide to ignore the migraine and socialize.

    I hope you’re able to find a solution that works for you! When I think of all the missed connections and memory-making moments I missed out on, it makes me wish I’d been able to find a solution long before I did:(

  • CathyinPain
    2 years ago

    Wow. Just read your story and am still crying. Two days ago we were going to have a get together at our house for Father’s day/Birthday party for my father-in-law. Thursday afternoon my migraine started and all of the medication I had didn’t touch it. By Saturday morning my husband and I pretty much knew I would be in bed and he would have to do everything. This has become a way of life for us anymore. He is such a great guy and I don’t know how he does it but he makes everything seem fine no matter what the situation is. It is Monday and the headache is still with me. I feel lucky to have worked 4 hours today before packing it in and going home but my depression has kicked in at this point. My family is so great but like your article says, I feel so alone. Just have to say it again, Wow. It really hit home. Thank you for your story.

  • Kara
    4 years ago

    I just read your entry and find myself crying. I feel this way 99% of the time. I know we are not alone because we have this amazing community to come to. But it is hard to fight these feelings each and every day in our lives. Sitting in a dark room all alone, even though there is your family right outside your bedroom door. I am extremely tired of hearing the phrase “are you still alive?” that it drives my depression that much further. This illness is beyond debilitating. It is hard looking at your life and seeing yourself as letting the rest of the world go by and people having “normal” lives without any idea that there are people out there that are suffering the way we do. I hope there is a break through for us. I hope it comes soon. I want to rejoin the world again. But I will not give up my daily fight. I will live in the dark because I have learned to live here. Until I can bare the light again. <3 Thank you for your story. It makes me sad, yet it gives me inspiration.

  • Christina Mattoni-Brashear moderator
    4 years ago

    Kara, what a beautifully written message. We’re so glad that you’ve found this community and are a part of it. Even though you’re feeling alone and in the dark yourself, you are an inspiration to others, by being here and sharing your story. I thought this article might be helpful: https://migraine.com/blog/you-just-do-not-understand/ – it has some great tips to help educate others about migraines. And of course, we’re always here if you have questions or need support – we’re thinking of you! Take care, -Christina (Migraine.com Team)

  • Jade84
    6 years ago

    This explains exactly how I feel. I spend so much time “in my own world” I can have conversations with people but not ever really engage in a conversation. And sometimes trying to explain how exhausting it all can be feels like you are just complaining and moaning all the time. It’s so good to hear someone else talk about it! X

  • Kerrie Smyres moderator author
    6 years ago

    I’m sorry you have to deal with this, too, Jade. You’re definitely not alone!

  • Jen
    7 years ago

    What a wonderful time your post came at-I was literally sitting on my couch yesterday thinking about how I felt as if I didn’t exist. Is that even possible? I felt like my body wasn’t mine…detached somehow with the pain. Anyways, at the very least it is very reassuring to know that others go through these feelings that would otherwise be characterized as “crazy”! Feel better soon and take care!

  • mo
    7 years ago

    Kerrie-I am so sorry you are suffering so; migraine is an insideous disease. I’m reading your entry while on my 2nd day without sleep because of the pain, in spite of the morphine (and benedryl because I’m allergic to morphine!). The rest of the household sleeps on—

    Our family concentrates on “baby steps”–sometimes it’s getting out of bed, sometimes it’s walking to the mailbox. Hopefully it’s just a little bit beyond what happened the day before.

    Mo

  • carly
    7 years ago

    Kerrie, I am dealing with the isolation due to an increase in my depression symptom and pain. I had shoulder surgery back on 12/28/12 and it is still painfully rehabbing. I am also overdue for my rizotomy at the c2/3 and c3/4 levels where my nerve roots are chronically irritated and not scheduled till 5/23. The RZ will flare things up b/f it calms down so I am anticipating more relief by close to 4th of July. No wonder I’m more agitated and depressed feeling…that IS depressing. Thanks for sharing Carrie

  • Janet
    7 years ago

    Wow Kerrie ..you’ve put my life on paper again….thank you…is it dumb to say I know exactly how you feel?

    Blessings,
    Janet

  • Danielle E.
    7 years ago

    Hi Kerrie,

    I just love all of your posts. I can resonate with almost everyone of your stories. It’s so comforting to know I’m not alone in my battle with chronic migraine. Thank you so much for sharing.

    Danielle

  • Kerrie Smyres moderator author
    7 years ago

    Thank you so much! I’m am truly honored to be able to provide comfort in your struggle. Take care of yourself.

    Kerrie

  • Jennifer Bunardzya
    7 years ago

    Hello Kerrie Smyres…..You have described how I’ve felt for a very long time. Words cannot express how grateful I am to have seen and read your story.
    My migraines are non-stop and relentless. I’ve got to the point to where I am overwhelmed to brush my teeth or bathe. The only thing I look forward to when I wake up is counting the hours until I can go back to bed to sleep.
    My life is literally passing me by…..friends and family will stop by for a short visit but the short time they are there is exhausting for the remainder of the day.
    My head, mind and thoughts are in a fog-like state. When people talk to me I can barely pay attention…and/or it sounds like Charlie Browns teacher…wa..wa..wa.wa.wa……Not taking in or even caring about what anyone has to say.
    I, too….lay in the dark, alone everyday (well..with my dog). I am spiritually, emotionally, physically bankrupt. I cannot even show emotion anymore.
    Where do we go from here to get help???? PLEASE HELP ME
    Jennifer Bunardzya

    (edited by moderator. For your privacy and safety, please do not post personal information such as email addresses and phone numbers. Jennifer, someone will be in touch with you soon.)

  • Kerrie Smyres moderator author
    7 years ago

    I’m sorry you’re struggling so much right now. Your comments sound so much like something I could have written a few years ago. It may help to know that I have been there and somehow made it through.

    You ask where to go for help. I found great comfort in mindfulness teaching, particularly in Jack Kornfield’s Guided Meditations for Self-Healing and Tara Brach’s Radical Acceptance. I learned about Toni Bernhard’s How to Be Sick after my most severe crisis period, but it is also filled with invaluable teachings — it might be a good place to start. Don’t let the Buddhist bent to these put you off. It is mostly used as a framework and for parables to illustrate points, but isn’t heavy-handed.

    I wish you all the best. Please hang in there and let us know how you’re doing.

    Kerrie

  • Janet
    7 years ago

    Jennifer,
    I know EXACTLY how you feel…sad part is I’ve spent an entire lifetime trying to find the right doctor with the right combination ..and now 37 years..I consider that pretty much a lifetime ..I’m no better off than when I began. Not to say that I never had relief…because way way way back years and years and years ago I did get a break. I’ve been looking for that again for the past 15 years…and honestly, I truly believe we can’t be helped..it is truly exhausting getting hopes up when you think you’ve found the right new doctor…spending all kinds of money to travel to where they are, only to fail again. I seem to be their disappointment. They couldn’t help me and they’re frustrated …shame on them. Feel free to write…if on,y to bend my ear.
    Blessings
    Janet

  • Diana-Lee
    7 years ago

    I’m so sorry, sweetheart. Feeling completely alone in a room filled with people is just awful. 🙁

  • taralane
    7 years ago

    Kerry – your post reminded me of a dinner out with friends when I was about 33 years old. It was a Saturday night, and my then boyfriend and I had not seen them in a few weeks and we were all anxious to have a night out where someone else cooked, not me, or the the other couple at their house. I remember sitting at the table feeling the nausea, the pain so intense I thought I was going to black out while sitting at the table. I told my boyfriend what was happening, and although he suggested he drive me home, I did not want to ruin the evening for everyone. I had just about enough energy to get home if I took the car and the other couple dropped him off on their way home. I got up, went to the car, drove back to the house, and took the meds I had, and lay down with ice and a prayer that the medication would work. My boyfriend came back about an hour and a half later – much earlier than the night would have been had I not gotten sick. I was in worse pain than I had been, and having nothing else to do, we went to a local emergent care where they gave me a shot of demerol and some compazine. The demerol took care of the pain, but as opiods do, left me useless the next day. I have not remembered that scene in a long time. It was hard to just get up and leave the table and not be able to stay and enjoy the meal I had already ordered. It was also hard to get myself home, and in retrospect I should have let him drive me home, and then go back to the restaurant. I was trying then to keep everything “nice” for everyone else, something I don’t do anymore. I was lonely then, and am lonely now. Fortunately now, my friends understand my disease and are flexible with me and “arrangements”. I do as much as I can when I feel able. The loneliness is just part of the disease, I think. I feel walled off in some way, every day. However I try to keep myself going and participating as much as possible in the world in whatever way I can – just to keep all that at bay.

    I appreciate your writing on this subject. It is something we all encounter, and it is good to share it “out loud” instead of holding it inside. So, thank you for a great post.

  • amf194
    7 years ago

    Your post really struck a chord in me. It really is one of the loneliest feelings to be surrounded by people but walled off from them by a migraine. I often repeat to myself the old farmers’ adage, “Make hay while the sun shines”. For me that means doing as much as I can when I am migraine free, and trying to appreciate that time, because it is sporadic and so precious.

  • CathyC
    7 years ago

    I too am sorry. Sorry both that anyone has this disease and that another human being head nods in understanding. There have been times when those who mean well have said “Are you sure you want to go (wherever it is) won’t there be something that might give you a migraine ?” It’s appreciated, yet we need to be out in the world too on days we feel “normal !” I love to see the world, even for a little while : )) Thanks Kerrie for writing how I’ve felt too.

  • Rene'
    7 years ago

    I’m sorry Kerrie. The sad truth is that your story makes me feel better knowing that I am not alone. Misery loves company?

  • Shaggy78
    2 years ago

    Sorry to hear that so many are in the same boat. I stay away from places like Facebook because all it does is remind me of everyone else’s lives moving past me and that makes me sad. So often, even when I do get the opportunity to interact with others I am only present physically. It’s like trying to have a conversation while someone is jabbing a knife in my right eye… it’s nearly impossible to give full attention to ANYTHING else.

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