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:
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?