This post started out VERY long in its first draft. Whilst I try to do my best to minimize how much I write in one go, (because I’m trying to save my pain-brain and yours too much effort), the issue of chronic-pain-friends is a subject that really deserves a decent amount of time to discuss…. So, in the end I decided the best thing to do was split it into three parts – each of which are STILL quite long (sorry).
Today I’m going to talk about friends and the concept of “ghosting”.
Something like ten years ago, some of the mothers I regularly crossed paths with at the playground gate at pickup time invited me to the beach for a communal playtime. I agreed; it was a Friday afternoon and it sounded like a lovely way to end the week and start the weekend. These mothers had obviously done this before. As the kids all ran down to the shoreline to make sandcastles in their school uniforms, one mum pulled out some beach toys, another had crackers and cheese, and a third produced a bottle of champagne.
I’m going to be extremely honest and say – I was shocked. I haven’t drunk alcohol for a long time as it is a definite migraine trigger for me, but I’m totally open to other adults drinking. That said, it wasn’t even 4 o’clock in the afternoon… it seemed pretty early to get started. More concerningly, small kids and the ocean is a normal part of life in Sydney, Australia, but it’s a combination that carries obvious risk. As the moms proceeded to finish off the bottle, I started to fret. I’m used to being the designated driver at parties, but was I going to have to take all these families home one after the other, or were they going to tipsy-drive their kids home? Should I ask? Should I stop them? In the meantime, how did I end up designated life-guard? And, to a lesser extent, what were other people thinking when they looked over at us – how was I being judged?
In the end, I did my best to go with the flow and figured the champagne might have been a one-off event. Really, I shouldn’t be so judgmental; who asked me to be the fun-sheriff after all? When the next Friday came around, they invited me again, I said yes, and this time I had some treats for the kids in my bag. When we got to the beach, a different mother unveiled the giggly-pop.
The next three weeks in a row they reminded me to come down to the beach, and each time I had an excuse and an apology ready. By the fourth week they didn’t bother asking. At the time I remember thinking, “who says I wasn’t busy three weeks in a row – why give up on someone so fast – why snub me?”, to which I could easily reply, “people know when they’re being snubbed… and you snubbed them first.”
And it was true. In modern terms; I ghosted them, and they ghosted me right back. And life moved on.
Fast forward to the last few years. To achieve the diagnosis of “chronic migraine” you keep a diary for your neurologist and show them you have had 15 or more migraine-days a month. In other words, you spend 50% of your life incapacitated in bed. Moreover, as anyone with chronic pain knows; there’s no way to predict in advance which days you’re going to be feeling OK and which ones are going to be difficult.
Needless to say, chronic pain makes you reliably unreliable – or chronically unreliable, if you prefer.
It means that over time friends, good friends, even family members, begin to make plans that don’t necessarily involve you. For a while they put you down as a perpetual ‘maybe’. Or they organise things on the assumption that you’re a ‘no’ and act genuinely surprised when you turn up. Or they assume you’re a ‘no’ and make a ‘no-surprise-there’ shrug when you don’t turn up. Eventually, when they feel ‘ghosted’ enough, you just disappear off their radar all together.
So of course, you feel judged. Abandoned. Rejected. Forgotten. Ignored. Invisible. This time around, unlike the beach-party situation, you didn’t get to judge them first, or ghost them to be ghosted in return. This time around, you did nothing inherently wrong. This time around, you were just so busy surviving, that even though you really wanted to be there, it – was – just – too – darn – hard.
If you do manage to get through to someone about how you feel, they commiserate, but also reiterate that it’s hard for them too. Somehow, inexplicably, you end up feeling guilty for being absent AND ashamed of seeming so needy to have voiced your concerns.
I put my daughters on the spot the other day and asked them if it is OK to ghost someone who keeps failing to turn up because they’re sick. One daughter said, “I’m worried I’m going to sound mean – but – if you’re relying on them to bring the potato salad to the picnic, then it is pretty inconvenient if they’re a no-show”. The other daughter also tried to be empathetic, but still wondered, “are you ALWAYS saying no… because… I’m sorry, but I’d take that kind of personally”.
This is one of those days when I’m going to have to admit I just don’t have the answers to the problem we’re all trying to solve. I know from personal experience how much it hurts, and how much it seems to feed-the-pain and push you further down into your darkness. I also know that the compromise – turning up so you don’t offend people – rarely makes you (or them) happier… I’ve lost count of the number of times I’ve been the ‘wet blanket’ or ‘wallflower’ hovering at the periphery, clutching my medicine-filled-handbag, counting down the minutes until I can politely escape.
I’m tempted to say that the people who really matter in your life will always accommodate you, and you might be better off losing those who don’t make the effort to understand – but I’m NOT going to say that. My fear is, that if you only keep the friends who really get you, and ditch the rest, you might find yourself very alone. There are very few people in my life who TRULY understand what I’m going through (and most of them are fellow-sufferers or close witnesses to my pain). It’s a very rare few who understand (and don’t judge) that I didn’t “choose” to miss my daughter’s graduation photographs at the beach; I wanted to be there will all our heart; it was just NOT POSSIBLE… and moreover, on top of the disappointment I felt on the day, I might always carry the shame and guilt I felt for failing to show up.
The only advice I can give you is – HANG IN THERE – I know how lonely it can be, but I also know how strong you are. Keep doing all that you can to heal. Keep looking online for communities of people who share your condition and with whom you can commiserate. Keep trying to explain to the people in your life that you ARE trying, really trying, to be there with them and for them, but that it is hard. Keep reminding yourself that you are not ‘broken’, and none of this is your fault. Keep remembering that sometimes we have to be our own ‘rock’. Keep believing that this is just a moment in time, and in the same way that you have experienced a multitude of different friendship-arrangements in your life so far, so too will you experience a multitude more in the future.
Best wishes, with all my heart, your friend, Linda x
The Mindful Migraine 
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