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Living with Migraine

Migraines and social life

  • By Ellen Schnakenberg

    MELISSADWYER13, It’s sad to think that our friends don’t always understand what we’re going through. It can be very difficult for us because we seek and need their support and understanding and sometimes it’s just not there. Sometimes we can overwhelm those that love us. Let’s face it – we can be high needs friends.

    Here are a few things I have learned throughout the years. They may or may not be helpful, but I hope something here might prove useful to you:

    1. Time is on your side. Sometimes it takes a good friend or a spouse years, even decades to finally understand what you’re living through. This is okay. You can always be there for your friend even though right now she is not being a very good friend to you. Only you can decide if the friendship is worth all the work it is going to take to rebuild.

    2. Remember that friendships need to be nurtured. Friendship, like communication, is a two way street. It may be that your friend is suffering worry overload and can’t handle it anymore. How can you help her with that? Have you had some time where the two of you were able to just kick back and have a good time regardless of your meds schedule etc? My own meds schedule was horrible for a long time, but I never made a big deal about it. My alarm went off, I took my meds without so much as a break in conversation, and we went on with life. As to the limitations you have because of your Migraines, maybe you need to set the stage for interaction. Pick a place you both enjoy and you can tolerate. Have some “best friend” time with her. Try to leave your Migraine situation in the background. Migraine is not WHO we are, it’s just something we live with. Let it be part of the background of you, not the definition of you.

    3. Remember that, if she is really that good a friend, your Migraine situation probably HAS ruined her life as she sees it. It has taken away her best friend. All the good times she remembers are now gone. She has had something stolen from her too… something precious. The difference is that she can run from it and you can’t. Wouldn’t you run from Migraine if you could? The fact is, some people can’t deal well with health issues. Those with cancer lose most of their friends. Family stops coming around. People are afraid to be around them. They still love them, but just don’t know what to do or say. Being chronically ill with Migraine is not much different. Sometimes it’s actually worse, because we at least understand cancer. There are support groups and lots of information available. Migraine is not that way. When I was in Washington DC June 1, one of my partners was a breast cancer survivor. Her message to the legislative offices we visited was simple: Breast cancer was easy. Migraine is hell. Definitely words that caught the attention of those we spoke with that day. The thing is, it is similar for those that love us. This is a beast no one understands. Seeing someone in pain all the time is hard. There has to be some good stuff in between all the hard stuff to nurture that relationship.

    What can you do to nurture your relationships?

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  • By melissadwyer13

    Ellen, you really did help me. I really want to thank you for taking the time to post all of that! I didn’t think about it as if others’ lives (that are close to me) have been drastically changed as well. And the statement “Breast cancer is easy. Migraine is hell.” realllllly does catch my attention. thank you very much, it’s more appreciated than you know.

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  • By mrsmaddog

    I can relate. In my case, it is family. They are all tired of migraines. They are fed up with the restrictions, plan changes, the $$$$ spent on Drs, tests, procedures, and meds. They are tired of worrying, too.
    I know what Yvonne means, and I envy her. If I had many friends, instead of the ONE friend who also lives with chronic pain, I would hope they wouldn’t run.

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  • By Anonymous

    How do you handle a family member who has decided that you aren’t sick? My SIL stopped talking to my husband and I about 5 months ago. She finally met with my husband a few weeks ago and told him she doesn’t think I’m sick and feels that I am “milking the system”. I have suffered from migraines for over 20 years and have not had a single pain-free day in 3.5 years. I am currently on medical disability and was recently awarded social security disability. I am so upset that she has decided to judge me. I spend every day in pain. I, like many of you, take tons of medication, try everything on the market multiple times and just want to feel better. Oh, and I have three young children I am trying to take care of. There’s so much more I want to say, but it would be a novel. Bottom-line, how do you handle family that clearly don’t understand and don’t want to understand? She has really hurt my feelings.

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  • By Ellen Schnakenberg

    Mrs.T,

    Thank you so much for your question. This is such a valuable question here at Migraine.com that I’m writing a blog series about it. I’ll be sure and link here when it is published, but first…

    Would you mind sharing with us what have you tried that has not worked?

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  • By Starshine

    I have had headaches since my childhood. My maternal grandmother and my aunt on that side of the family were. Migraine sufferers. Their solution was to put used tea bags on their eyes and lie down with their heads lower than their bodies. I don’t know how we’ll it worked for them, but I never got any relief that way. As a child, when I complained.of headaches, my family accused me of trying to get out of chores or homework. They said I was too young for headaches, so I learned to keep my mouth shut and just do my best to just muddle on.

    Years later, when I was with my now husband, he was very sympathetic and seemed to want to know about my back and head pain. He was with me at the dr’s office when I was told I had vascular migraines. He also came to the neurologist I saw concerning my back. He used to be quite sympathetic and tried to help me when I needed him. In time, however, he began to complain that it was always about me and my problems. I didn’t want him to feel that way so I stopped talking about my pains and tried to focus more on him and his needs. Now he complains that he does not understand me anymore. He never knows what’s up with me that one day I’m running around doing things and then I don’t get up for two days. I then try to tell him how I feel but he is angry already and demanding more consistency from me. I would LOVE to live the way regular people do, but I can’t. How do other migraine sufferers deal with this?

    I just found this website today and I will most definitely be back. Thanks. Starshine

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  • By Ellen Schnakenberg

    Hi Starshine 🙂

    First, you should be aware that Migraine is a genetic, neurologic disease. There was an old theory that it was vascular, however that theory has been disproven in recent research. There may be (and usually is) a vascular component, but Migraine may be present without it.

    One way to “test” if you might be having a Migraine is stand up and to lower your head between your knees. If the pain gets worse, it may be Migraine. If it doesn’t, it usually isn’t a Migraine. Understand, I am not a physician, but your family members lowering their heads then putting tea bags on eyes (both?) sounds much more like tension type headache to me. Much easier to treat, and a much different scenario.

    You have just described a common experience for Migraineurs however. There is a lot of stigma where Migraine is concerned. There is also an enormous number of myths surrounding it, and plain old misinformation or antiquated information. The vascular theory is one example, but so is the idea that you were too young for headaches. My son wasn’t even a year old and was diagnosed with Migraine, and this is not actually all that uncommon.

    The best thing you might want to consider doing is getting to a headache specialist. They have extra training in the diagnosis and treatment of headache disorders. It is all they do, day in and day out, and they are very good at it. Your chances of getting appropriate treatment greatly increases when you are being seen by a specialist.

    It is truly difficult for someone who doesn’t understand Migraine to *get it*. Understanding the experience however, is one thing. Understanding what Migraine is and what is helpful for patients is another.

    While many of us have loved ones that are far from interested in learning anything about our disease, some are willing to try. Here is a post I wrote some time ago re: talking to friends and family:

    https://migraine.com/blog/family-and-friends-that-don%E2%80%99t-understand-migraine-disease/

    One of the best things I ever personally did was to be sure that my husband came with me on doctor visits. This was important because he got to learn firsthand about all that we were doing to try to get them under control. He also learned more about the disease itself and helped me remember what the doctor was telling me. After a while, he began to *get it* and our entire relationship dynamics changed. He is now an excellent care partner, and although he doesn’t understand the pain, he tries very hard to help me when I need it, and understands my limitations.

    Here is another article that you might find interesting if you think that having friends or family come to your visits might be helpful:

    https://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/

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  • By rilniski

    I get tired of friends and family not hearing me when I try to talk about migraines so for the most part I don’t talk about them only when they ask. And then even sometimes they don’t care. The other night I was talking to a friend on the phone and she asked me how I felt over the holidays. I started to tell her and immediately she got another phone call so had to go.

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  • By Nancy Harris Bonk Moderator

    Hey there,

    It is difficult to find support, especially from those we love. It may be that they don’t truly understand what a migraine is and people who haven’t experienced a migraine really don’t grasp what they entail. Many seem to think of them as just a “headache.” Migraine is so much more than a headache as we know. We are here for you!

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  • By MsMillie

    I used to do so much before I had migraines. I was into adventure sports, skydiving and hang gliding, etc. Now I am almost like a hermit. I hate going out or making plans with friends because I am afraid of cancelling at the last minute (I usually do) if I feel a migraine coming on. I mean, the last thing I want is to be out and about when I get hit with one of these things. What’s really annoying is that everyone thinks my personality has changed into a risk-averse, shy, quiet, introvert. I guess I can’t blame them because that’s all they see right now, but…frustrating still!

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  • By Ellen Schnakenberg

    MsMillie – Migraine has a tendency to take the spontaneity out of our lives. That doesn’t mean we have to become wallflowers though! I hope you are able to find a good doctor and some preventive medicine to help you, so you can get this part of yourself back again. Really, I hate to even say that, as those parts of us don’t leave us… they just get stuck, locked inside us while we work through out health issues.

    I’m right there with ya. Used to do all kinds of amazing fun, spontaneous things. My brain still says “GO!” but my body says “no”.

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  • By Ellen Schnakenberg

    garfieldrules – I am so very sorry. There are so many times that the isolation really gets to me too. I feel like a hermit. I live in the country, so that doesn’t help the situation at all either. That said, I try really, super hard to get out at least once weekly. That’s not usually a social occasion, but most often for grocery runs or doc’s appointments. Still, it at least gives me a break from the house that I have come to detest as if it were a prison at times.

    Have you spontaneously asked friends to come over for coffee and cookies on a particularly good day? How about deliver a handful of flowers from your yard to a neighbor just to talk for 5 minutes?

    Sometimes we have to change our perception of what a social life is. We can’t keep ourselves stuck in what our lives used to be or we’ll be miserable. I think the trick, for me, is to try to re-define those things I need in my life, and that make me happy. Had to learn new ways to put myself on the list, which was really not in my nature. Even when Migraining, I usually at least can come up with 5 minutes to chat with someone on the phone to share some little blessing from the day. Maybe you could try to think outside the box a bit and figure out what you can do and concentrate on those things. Yep, they’re probably pretty little, but living with Migraine isn’t our choice, it’s what we’re stuck with. What is our choice is what we do with our situation.

    Sending you gentle ((Hugs))…

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  • By Chris Hicks

    Tonight is Date Night!

    Tuesday’s are Date Night for my wife and I. As I write this, early on Tuesday morning, I have a HORRIBLE migraine. Beyond the usual issues when I have a migraine (do I go to work? Do I treat with abortives? Can I meditate my way to a lesser pain level?) I am also, on this Tuesday morning, wondering if yet another Date Night will be blown by Migraine?

    My wife is hugely supportive as I struggle with Chronic Migraine. Yet, I know that this disease puts a real strain on our relationship. I cannot tell you how many times I have had to cancel out due to migraine. This includes our Date Nights, family activities and just about anything else you can imagine. If it is something that can be “looked forward to” then migraine has ruined it at least once for me, and for my wife.

    This morning I am feeling this most acutely. I fear that yet another Date Night is going to be canceled because of the migraine. I know that we can stay in and watch a movie, but that is not the same. And, it is certainly less enjoyable to spend time together when I am only half-present due to the pain of migraine.

    Sometimes I feel like the migraine is chipping away at the foundation. Each time I cancel Date Night, each time I cannot be fully present and fully contributing… a little more is taken away. I know that part of this is coming from the fact I am in the middle of a migraine right now, looking at my life through the dark and depressing tinted glasses of migraine-vision. I suspect that there is, however, some truth to this feeling.

    I sure do hope that this migraine backs off so that I can enjoy Date Night with my wife tonight! If not, I must fight the overwhelming sense that I have somehow dropped the ball again. Am I the only one that has trouble keeping myself and migraine separated sometimes?

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  • By Ellen Schnakenberg

    Chris – How did your date night go?

    We used to do date nights. We don’t anymore. Don’t get me wrong – it’s just the planned part that has relaxed. We’re still taking time out regularly to be a couple. It’s that or we’d really be a mess with me being chronically ill all the time, lol.

    What I mean is this… can you embrace being spontaneous once in a while? Sometimes half the fun is the anticipation.

    Instead of saying to your wife – “Next Tuesday let’s go to eat”, maybe try saying, “Next week I’m going to plan something special. It’s going to require heels and a couple of hours, so get ready!” She’ll spend the whole week just thinking about what your special date will be all about, and you won’t have to worry about any specific night getting bungled up by a Migraine. Just have a plan and be ready to put it into action when you feel better.

    As to your other question, yes, we’ve had so many things ruined that I try not to think about them anymore. Would you believe I’ve never been able to celebrate an actual anniversary?

    The latest was our once-in-a-lifetime 30th anniversary trip from which I just returned. Thankfully the trip lasted a full week, so I only ruined about half of it, but even the good days weren’t great, just do-able. I spent a good part of the trip in tears because of the pressure of knowing I was messing things up for everyone else. I know hubs and the family were disappointed, but they also know that getting some good time is better than no good time together. It makes us really appreciate those good times even more. We now embrace the fact that a “good time” may mean raking the lawn or putting up corn together, or it might be a movie in bed together with popcorn, or it could be a trip to Iowa for something special to eat. Making lemonade out of lemons means making half the fun – not knowing!

    ~Ellen

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