I work from home since being medically retired (AKA ‘let go’) from my last formal job. The bulk of that work is freelance writing, through an Australian-based writing service, which is manageable most of the time. However, it seems, my health situation still hasn’t excused me from RSVP’ing with a “YES” to the company’s Christmas party – and my boss isn’t happy.

womanpartytalkingAs many others with unpredictable autoimmune diseases will understand, it’s hard to plan ahead sometimes, especially if future plans mean being out and about. This can be particularly hard during the holidays, and the silly season has well and truly launched in Australia. People’s Christmas trees are going up, decorations and gift marketing have been going on in the shops for months now, and party invitations are starting to make their way around.

My boss – who knows I have rheumatoid arthritis – decided this year to have an end of year party to get everyone together. Given that we all work from home, and a few of us are interstate, I can see her point. Very few of us have met face to face. She decided to have it at her home, keep it fairly informal, and open it to partners as well.

That’s all well and good, but I can’t, with any reliability, RSVP months ahead – which is how long this shindig has been in the works. I said that to her right at the beginning. It was simply too far off for me to know whether I’d be able to make it – especially since it’s unlikely my partner will be interesting in going, and she lives a LONG way from where I do, which would mean a late night drive home alone, which is something I try to avoid. I thought she’d heard me.

Apparently not…

I’ve had multiple emails now, asking how I’m doing and do I think I’ll make the party, stressing that the interstate writers are all coming – tacitly pointing out that other people are making an effort… Each time, I’ve reiterated that a. I won’t know til the day, and b. I’ve actually been deteriorating. It’s a casual BBQ, so me being a last minute yes or no isn’t going to affect catering. Really, it shouldn’t be an enormous issue whether I can make it or not.

Then the wild card happened. I’m switching my biologic drug from shots to infusions. Given I’ve now had a couple of weeks without any, with the gap that happened while the powers that be sorted out the authorities I needed, and I’ve deteriorated even more VERY quickly, so clearly it’s working for me, but it hasn’t been enough. An infusion will give me a bigger dose, and I’m hopeful that that means more improvement overall. Fingers crossed. So, last time I got the hassling email, I told her that was happening, and I’d definitely be a last minute attendee if I make it because I have no idea how I’ll be after the infusion. It will deliver a massive dose (compared to the weekly shots) in one hit, and that will happen two days before the party. Anything could happen. Her response to that was to assume I’ll be bouncing around ready to party…

*sigh*…

I don’t like having to do this. I really don’t. I’d love to be able to look at an invitation, check the diary, and send off a response straight away. But I can’t really, any more. And while sometimes it means I don’t make it to some functions, that aspect of this issue isn’t what bothers me the most. It’s the fact that people don’t listen. These emails have been coming at me for months. I’ve given her as much information as I can. And she’s not hearing me, let alone accepting my position. She doesn’t have to understand, even. She just has to hear me. And she’s not.

She’s not the only person either; she’s just a particularly good example of this phenomenon at the moment. I have friends who don’t really hear either, a lot of the time – not if it interferes with what they’re trying to plan.

It brings back memories of when I had my first baby – before I had RA – and people (childless, because I was the first of our crowd to have a baby) would say to me blithely, “Just bring the baby.” To anything and everything… Sometimes that didn’t suit. Sometimes, that would have been quite difficult. Sometimes, I just wanted to have a moment minus the baby. But they didn’t listen. Couldn’t hear it.

So, to my mind, there’s an issue that goes way beyond illness. It’s about becoming invisible when you move out of the mainstream. Most people filter information via their own experience. The experience of severe RA isn’t one most people have. So they don’t always understand why I can’t commit. Which is fine. They don’t have to. But I do expect them to actually listen to me and accept what I’m saying, whether they understand or not. Just as I’d hoped that my childless friends would understand back then when I was the only one of them with a small baby, and that my friends now will make the effort to do the same.

Well, I’m not invisible. And if I don’t make it to the work party, I guess she’ll be forced to acknowledge what I’ve been saying for months now. But it really shouldn’t be like this.