A few weeks ago I listened to an interview with Jennifer Brea on living with CFS,* in which she mentioned the ongoing grief of living with chronic illness. Again and again things don't happen in your life that do happen to the well people around you, so again and again you find yourself grieving new losses.
* the interview's well worth a listen, and what I'm discussing here is only a tiny part of it.
I really resonated with that, but I'm not so sure that was a good thing! Ever since I've found myself ever-so-much-more aware of the background grief I think I always live with, and the thing that's hitting me the most right now is that I'm not part of anyone's world.
I don't mean no one cares about me - I know lots of people do! - but almost no one contacts me, people almost never turn to me when they're wanting to talk something through with someone, and certainly no one thinks of me when they're wondering who they could do something fun with.
It makes Facebook a dangerous place to be - especially with how I'm feeling right now. I keep on seeing pictures of things I would likely have been part of, were I to be well. Gatherings no one invited me to, weekends away no one even told me were in the planning. Today I heard that a former close friend (who is only 'former' because I don't have the energy to keep up the relationship) has been in a months-long discernment process I knew nothing of until she was ready to announce the outcome publicly. Seeing so blatantly that I was no longer 'part of her world' felt like a kick in the guts.
But of course, I can't go to these events I'm not invited to: I know that and so do my friends. I don't even have the energy to keep up with what events are happening and how they all went (although I cherish the invites I do get, and the snippets people take the time to share with me, painful though they can also be). I would love it if more people phoned me (and I think I could cope with a few more phone calls), but I understand why people don't. It's hard to phone someone who's only available at a few very specific times (all during working hours), and people are rightly nervous of wearing me out:* I can only manage a couple of phone calls a week, tops, after all. And I really don't have the energy to 'be there' for someone as they work through difficult and complex decisions, no matter how much I would like to be.
* although please don't be too nervous of that - if I'm resting or just not up to talking I simply don't pick up the phone. If you phone and get no answer, just leave it and either email me or try again in a few days time :-)
So I continue to check Facebook several times a day (although I do try to avoid it when I'm feeling especially vulnerable). Passively observing what goes on there is my one link to the lives of many people I still think of as friends. It's important to me to maintain that connection, even though I'm really sad at how 'thin' a connection it is. And I delight in the emails (and even occasional phone calls) of those few who make the effort to stay in touch, even though I'm no longer part of their worlds.
I don't think there are any answers to this: it's just one of the realities of living with a chronic illness. But right now this one often feels really hard.
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