Before chronic migraine changed everything, Daisy Swaffer used to be a social butterfly. Here she talks about the adaptations she had to make to manage her friendships.
When I was diagnosed with chronic migraine many years ago, I never thought that my condition would impact on the relationships I have with my friends.
Before chronic migraine, I used to be able to make spontaneous plans, stay out as long as I liked, and drink as much as I wanted to. I was a social butterfly juggling many friendships and managing to keep up with them all. Yes, life was a little exhausting, but in a good way.
Not once did I appreciate how easy it was to maintain my social life.
New kinds of interaction
My main way of socialising used to be to go out and ‘do things’ with friends. That included going to the theatre and music concerts, attending big events, setting off on mini breaks and enjoying shopping trips and boozy nights out.
I loved doing all of those things, and would still love to do them now, but unfortunately they just aren’t compatible with the lifestyle I lead today to minimise my migraines. These days socialising means hanging out at each other's houses or going out for a quiet afternoon tea.
Before chronic migraine I used to catch up with friends in person, often meeting up for a good old gossip about each other's lives. These days, as I am far less able to get out and about, I find the best way to catch up is over the phone or internet. Social media has been very helpful in making me feel up to date with the lives of friends and text-based chat apps on the phone and computer help me feel like I am still part of the group.
Inevitably though, some friends have more or less disappeared from my life. While I know this is because of the change in my situation, it’s still hard to come to terms with it and to recognise that this is not because I did anything wrong.
Finding a new language
When you have a chronic illness it’s easier to communicate with friends if you can find a way of speaking about it which works for both parties. I often use the Spoon Theory when speaking to my friends. I also use analogies from games, like using an imaginary energy bar or having different levels of spell slots available.
Being able to tell a friend I am “low on spoons today,” and for them to understand that this means “my chronic illness is hitting me hard and I'm going to struggle with the basics, so anything above and beyond that isn't going to be possible,” makes communicating much easier.
For example, a friend might ask if I want to go shopping and I simply reply: "That's a level 3 spell and I've only got level 1 and 2 spell slots left today".
The friend understands this means I’ve already been doing things that day like household chores or a trip to the supermarket, so popping round to see me for a chat and cuppa will be fine but going out won't be.
I highly recommend finding a language that works for you and your friends to quickly and easily convey what you can and can't do without having to explain the ins and outs of how you are feeling that day.
There is a certain phrase I’ve said so often that it now rolls off my tongue with great ease: "All plans are subject to short notice cancellation due to migraine."
I try to remind my friends that a migraine attack can change whatever plans we’ve made. This isn’t just a reminder to them, it is also a reminder to myself that sometimes things are out of my hands.
This means no matter how expensive those theatre tickets were, or how much we wanted to go to that craft show, if a migraine strikes I would have to bow out.
All of my regular friends are used to short-notice cancellations. These days, most of those friends will check in with me in the morning of the event to see how I’m feeling. Friends who understand the nature of chronic migraine, who check in and who are prepared for the answer to be no, make a huge difference to me and how I feel about our friendship.
Having them take the first step and ask (while being prepared for disappointment), rather than me having to wretchedly message to cancel, changes the relationship in such a positive way.
If your friends don't already do this, it is worth asking if they would.
There is no way to get around it: with chronic migraine, you just won't be able to do all the things you would normally do and inevitably plans will have to be cancelled. If you have friends who can't understand this and won’t forgive you for it, then there’s a good chance they’re merely fair-weather friends.
You might love hanging out with fair-weather friends and they might love hanging out with you, but know they only want to be around for the good times. These are the kind of friends who still think migraine is “just a headache” and can't understand why you don't just take a painkiller and carry on.
If you have friends who can't forgive you for your health interfering with plans, it might be time to move on from those friendships.
Yet forgiveness goes the other way as well. I used to be a very reliable friend. I would always be where when I said I would be, on time and ready, so letting people down has been very difficult for me. I have had to learn to forgive myself as well. When something happens within your own body it is so easy to blame yourself for it. Forgiving yourself is an important step to maintain healthy friendships.
I have a stock phrase for when people ask me how I am. I say: "Not too bad thanks, how are you?" I say this so I don’t have to lie, without having to share the grim details and because it steers the conversation in a different direction.
If a close friend asks me how I am though, it is very likely that they actually want to know. If I’m going through a rough patch, I tell them. They want to know I need extra support. If I’ve had a good run, I tell them and let them celebrate that with me.
If something they said or did caused a problem for me, like wearing perfume or using the word ‘migraine’ when they actually meant ‘headache,’ I tell them and they learn more that way. It’s always advisable to be honest with friends, but when you have the additional strain of a chronic illness it can make all the difference.
Seeing things from their side
Good friends who love you, want what is best for you. If hanging out with them causes you pain and suffering then, much as they love spending time with you, they wouldn’t want to add to that. If that means doing fewer things together in order not to trigger an attack, they will always choose quality over quantity.
Good friends will always want to choose what is best for you.
Also remember when you are spending time with friends they want to be your friend, not your carer, so make sure you are looking after yourself. Keep yourself hydrated, make sure you take your medicines, and eat and rest when you need to. If in doubt, put yourself in their shoes. Imagine they were the one with chronic migraine and ask yourself what you would want them to do.
It’s definitely harder to maintain good friendships when you live with chronic migraine. It takes extra thought and communication, but it is so rewarding. Knowing that your friends understand your situation, and want to be there for you despite migraine can make all the difference.
NPS-IE-NP-00201 March 2021