When Friends Don’t Get It

When Friends Don’t Get It

Most of us with migraine have been there: you tell a friend you have to cancel and they make a big deal out of it. Maybe they don’t do anything so misunderstanding as accuse you of being unreliable or selfish (if they do, perhaps they are not such a good friend), but perhaps they make a point of how much it sucks, how much you’ll be missed, or how disappointed they are. In some situations, this could be an appropriate response, but at least for me, because I have to cancel and reschedule so often, the response I most appreciate is, Okay, no big deal. Let me know when is good! In these scenarios I’m in pain, and feeling guilty. The last thing I need is to feel as if I’ve let somebody down.

Or how about when you’ve ventured out into the world, perhaps against your better judgment, to spend time with friends in a trigger-filled environment. Very sensibly, you keep your visit short, and when it’s time for goodbyes your friend begs you to stay: Oh, but you are doing so well tonight, aren’t you? Just one more hour, please? While it’s nice to know they enjoy my company, I’d really prefer to leave with out a fuss, knowing that they want to help me take care of myself.

Maybe you have a friend who is constantly suggesting triggering activities, refusing to accept your physical limitations. Maybe you have a friend who insists that your relationship depends on the triggering activities that you used to enjoy together. Maybe you have a friend who will turn off the ceiling light, refrain from wearing perfume, or turn down the music, but does so only when asked, begrudgingly, as if you are trying to annoy them.

In my experience, when friends have responded in these ways it has not been malicious. I truly believe that they care for my well being, as I do for theirs. I think their behavior has stemmed from a few things: a genuine ignorance of the severity of migraine; a lack of experience in helping people with illness; and a failing on my part to communicate my needs in a clear, intentional, memorable way.

Ignorance around migraine is a difficult to overcome. Despite neurologists recognizing migraine as a neurobiological phenomenon, advocacy and awareness work still has a long way to go before the general population sees it as the widespread, severely disabling condition that it is. It is unfortunately unlikely that a friend, unless they have experienced migraine themselves or witnessed it in a close family member, will grasp its effect on your life without some coaching. While it is inconvenient that this teaching falls to us, sending off some resources or explaining the basics of migraine to a friend who is willing to listen might pay off in the end.

Secondly, if your friend has little experience in helping people with illness, it might not be instinctive for them to ask helpful questions such as, What can I do? What do you need from me? Or How can I help you feel your best? I am so fortunate to have some friends who have asked me these questions, and I think it’s no coincidence that those friends have training in therapy or caretaking of some kind. If a friend does not ask these questions, maybe we need to offer the answers anyway.

And that brings me to the third issue: communicating our needs in a way that is clear, intentional, and memorable. Often I’ve made the mistake of asking for an accommodation in passing, or mentioning my needs amid distractions, while friends are otherwise occupied with their own all-consuming, totally legitimate problems. It’s not really fair for me to expect my friends to grasp the gravity of my situation if I mention it over a few laughs in between cocktails… Perhaps (and I haven’t actually followed my own advice on this one yet) my needs could be made clearer in the form of a letter or email. Maybe it could look something like this:

Dear friends,

My life has been really challenging lately due to migraine. Managing the pain is really complicated and has disrupted all parts of my life. I cherish your friendship and still want to spend time with you, but I might not be able to do it in the ways we’re used to. Here are some ways you could help me to still be in your lives as much as possible:

  • Please refrain from wearing perfume/cologne if we are going to see each other, and try not to use products with synthetic fragrance in your home if I am coming over.
  • Let’s try and meet at my home whenever possible. We can also scope out quiet cafés our outdoor spots nearby.
  • Please don’t blare music or spin your disco ball when I’m around. Please.
  • When I say I need to go, please get my coat and encourage me to get to bed on time. This is majorly helpful for pain prevention. If I stay at your house past 10pm, please tell me to take my butt home to bed.
  • Please do invite me to stuff, but try to understand that if I need to cancel it’s my body that is unreliable, not me. I’m getting really good at formulating back up plans, and I promise there can always be a raincheck.
  • Please know that even when I can’t hang out with you, I’m thinking about you and wishing you well. I hope you’ll do the same for me.

I’m not sure that such a letter would allow me to be less isolated (migraine demands isolation so much of the time), but perhaps this way I would know that I’ve said what I need to say in the best way I know how to say it, and if a friend still doesn’t get it, maybe they weren’t such a great friend after all.

How do you maintain healthy friendships with migraine in the mix?

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 (7)
  • Sara
    3 years ago

    I lost my 12 year relationship six months ago & feel like it was the last straw for me. I’m gonna get back to my life, but wow, it’s hard when you can’t work and have lost everything. I don’t want to date anyone, because I don’t trust that I’m a good partner. This is not what I envisioned for my life ten years ago, and I’m having a hard time taking those two steps forward when I have to take a step back. Probably will have to move to a more affordable place & be on disability. I work p-t for my ex, and since he’s moved on with his new girlfriend (whom he was with before we were officially over), it’s just very difficult to function. But I can’t work for anyone else – who would hire me? I need flexible hours from home and a good hourly wage in order to barely get by. I end up so frustrated that I can’t function.

  • laurahc
    3 years ago

    Monica and Christina, I totally relate to everything you both wrote. It’s a terrible feeling to be ignored and have your pain and illness dismissed by family and friends. I was diagnosed as chronic in 2012 and my husband left me 18 months later. I dated a really nice guy who would take me to the ER and said he wanted to be my rock during my migraines. After a year, he just couldn’t take it anymore. Migraine is so isolating, mostly because people don’t understand it. I haven’t worked in two years because of the severity of my migraines, and I have one friend who keeps insisting I get a job. She just doesn’t hear me. I have lost so many friends, but, thankfully, a few have hung in there because otherwise I don’t know what I’d do. My family offers no emotional support. I can’t even remember the last time they asked me about my migraines. It’s no wonder that migraine is so strongly tied to depression. I have a new boyfriend now who tells me he will never leave me because of migraines. But it’s hard to trust anyone anymore. That’s the sad truth. Sorry for rambling on. Like every other day, I have a migraine.

  • Meaghan Coneys moderator
    3 years ago

    Hi laurahc – Thank you for sharing your experience with us. We are so happy you are a part of our community. It sounds like you feel a bit isolated and misunderstood. Please know we are here for you and we definitely understand you. You mentioned having a migraine attack today. I thought you would find the following articles helpful – https://migraine.com/blog/a-list-call-for-creature-comforts/, https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/. They give self care tips for when you are in the midst of an attack. Also, the following articles provide self care techniques for managing mental health symptoms correlated to chronic migraine – https://migraine.com/migraine-and-mental-health/mental-health-migraine-and-exercise/, https://migraine.com/migraine-and-mental-health/managing-migraines-and-relationships/, https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/, https://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/. Perhaps you will find some good nuggets of information in there. Sending loads of good energy your way today. Warmly, Meaghan (Migraine.com Team)

  • jns192 moderator
    3 years ago

    Christina,
    Thank you for having the courage to share your story with us. As a fellow migraineur, I understand how difficult it can be to express what you are going through to others- even those we love. It is wonderful to hear that you have not lost your faith and that it is able to help you get through day to day. But when you feel like you have no one listening, please know that the migraine.com community is always here for you. You are not alone in this battle and many of our community members (including me) can relate to you!
    Many members have found it helpful to speak with a therapist regarding their pain. If you haven’t already, maybe this is worth looking into.
    I also thought you might enjoy a few articles on our website that are choc full of ideas from community members on how to manage migraine:
    https://migraine.com/blog/community-thoughts-crazy-things-help/
    https://migraine.com/blog/a-list-call-for-creature-comforts/
    https://migraine.com/infographic/community-tips-for-migraine-management/2/
    Wishing you a gentle evening.
    Jillian (Migraine.com Team)

  • Monica
    3 years ago

    What you wrote really hit home with me, especially this week in particular, because on Monday I came across an article entitled “10 Things You Can Do To Support Your Loved One Living with Chronic Migraines”. The article had 10 really wonderful suggestions & ideas in it so I sent it to 12 close family members/friends (along with a brief note really trying to explain what it’s like to live with this disease/disorder and how terribly alone and isolated I feel) and, much to my dismay, not 1 person replied to me. Not 1. I feel like I have been completely written off by everyone in my life (except for my husband & 2 children) all because my migraines are “too inconvenient” for everyone else and everyone’s tired of me having to cancel plans due to a migraine attack. It’s the worst feeling in the world. I feel so unloved, uncared for, not supported & just plain forgotten. I really don’t know what more I can do. I’ve sent out SO many articles and information on my condition, yet no one seems to want to take the time to sit down and READ what I’ve sent so they can better understand my “situation”. I’m already isolated most of the time as it is due to my migraines and now I’m being purposefully isolated by my family & friends all because I have a medical condition that I have absolutely NO control over & that there’s no “magic cure” for. So thank you for what you wrote…it’s nice to know that I’m not alone in my isolation (what an oxymoron that is right?!). ~Monica

  • cal2
    3 years ago

    I relate totally. Before this began nonstop in 2007, I socialized and thought I had real friends. My husband loves me and I’m not the person he married but he knows nothing at all about this other than I have a migraine that started and didn’t stop. I’d had a migraine each month for years that went away. I try understanding how difficult it is for friends and family to live with this. Most of my “friends” were gone by the end of 2007; I’d always gotten together with them but so many didn’t understand when I had to cancel plans the 1st time. To them, I think because I’d known when my normal migraine would be over for years, they couldn’t hear or comprehend that this wasn’t a normal one and wasn’t going away and that, when I felt better, I didn’t feel well. Years passed with neurologists dismissing me because something should have worked so I must be trying to get pain pills followed by regular doctors who treated me for non-migraine things accusing me of pretending to be in pain when it had nothing to do with migraine (as in having a annual Ob/Gyn exam and my ObGyn feels a need to have an opinion) etc. So, here is 2016, I have a wonderful migraine doctor who knows that some things that help “everyone” don’t and that’s what saves me. In 2016, I have 4 friends who have forgiven even if they show they don’t understand and won’t try. I still have a husband who loves me and I try hard to do anything to be the best I can be but he won’t read anything, doesn’t listen to me speak even about important or fun things and admits that he doesn’t pay attention when I tell him I can do more if he makes a few things easier (tell me when he decides he wants to go out instead of at the last minute because pain escalates rushing, turn down sound when talking to me because I can’t concentrate through it etc). I forgive constantly because I feel guilty but it hurts and I’m lonely with him. He told me in 2016 that we’re the forever couple and how happy he feels when he sees I’m home. It was so beautiful and loving but the tears later were because I know he feels that way but I feel so alone. I have totally stopped saying anything and I pretend I’m okay whenever possible. If he loves me that much and doesn’t care to help or understand what my days are like, why would I expect friends to? So, when I need to talk to someone and when I need support, I talk to God. I talk to Him each day but there is no one else who will listen. I’ve never lost my faith even though friends have accused or assumed I have. In 2016, I’ve stopped giving websites, printing things that I desperately need someone in my life to know at the least and no longer speak of the pain I’m living through each day. It didn’t stop the hurt but it eases some of the frustration of seeing it ignored. I feel for you. It can be as debilitating as the illness.

  • Douglas
    3 years ago

    My wife frequently declines invitations due to the likelihood of my symptoms flaring. I suffer from familial hemiplegic migraines — people either are freaked because I look like I am having a stroke, or they point and laugh (and this is mostly younger people).

    We are lucky that our closest friends are understanding and flexible (he is a chiropractor). My family is also very supportive, though they do insist on my presence at certain gatherings. My aunt also suffers from migraines, both hemiplegic and also chronic painful migraines (I am fortunate to have no pain) and has been very supportive.

    We have stopped associating with some family and friends due to not understanding the impact of triggers. It pains me to see my wife curtailing her socializing because of me.

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