Saturday, July 26, 2014

Lupus: It's Not a Harry Potter Character.

The lovely Rachel from Fluted Cups & Ampersands wrote a post recently about how to talk to sick people. It's a pretty cool post, and really worth a read.

I've realised that I don't always know how to talk to "healthy people", and that is far more about me than it is about them. It's not because I think they're all that different from me, or that I think just because someone hasn't experienced chronic illness themselves they will automatically lack empathy. And it's not that I have nothing to talk about aside from health issues - there are a multitude of other things about me that are more interesting than my illnesses. It's just that all the things that happen to me are complicated in some way by my health. My anecdotes are often the type of stories that people don't know if they're allowed to laugh at, and sometimes a story I think is hilarious, will make people start pitying me, or worrying about my well-being. When people ask why I walk with a crutch, I just say I have lupus/autoimmune arthritis and leave the rest of it out to make it less complicated. But then sometimes that means I have to stop in the middle of saying something to explain about one of the million other illnesses, disorders and allergies I live with, because otherwise the story won't make sense. By the end of that, I've usually forgotten what I was trying to say in first place and the conversation has taken a bit of a depressing turn.

In a way it's really nice talking to people who don't know any of my medical history. Because then I can just be a person, and pretend the rest of it doesn't exist, at least for a little while anyway. But then when it gets to the point where I do need to start explaining, it just brings to my attention exactly how many things there are about me that are a bit left of centre. I was telling one of my friends that when I start thinking about all the things that aren't quite right with me, I realise I really should have been weeded out by evolution by now (again, the kind of comment that can make healthy people uncomfortable and chronically ill people crack up!)

So sometimes it's just easier to give up on trying to explain and start censoring my stories instead. For example, if I didn't know you that well, this is what I might tell you about my night last night:

I went to a play last night Second Afterlife. It's a clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot.

If I know you a little better, I might tell you this:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

And, if I know you well enough to know you'll be okay with hearing it (or you read this blog) I'll tell you the whole story:

I went to a play last night Second Afterlife. It's a very clever play about a guy who wants to delete his facebook profile, but first has to enter the internet and confront the ghosts of his past online profiles. I enjoyed it a lot. On the bus home, a guy came and sat next to me and asked if he could pray for me to be healed. He was really nice, and while it didn't really influence me in any religious way, it did remind me of the kindness of strangers, which is always welcome. Then he asked me if lupus was a character from Harry Potter. That part made my day.

Then, while I was walking home from the bus, I started experiencing some really strong pain. I kept walking, because... well what else can you do? But walking got harder, I got dizzy and then I collapsed... about 100 meters from my front door. I lay there for a while, and it really sucked, but then I looked up, and I was lying under this beautiful tree and I could see the stars. Somehow that didn't feel so bad. Then it started to rain, and that made it suck again.

Obviously it all worked out okay in the end. I was still in one piece, and after a while I felt well enough to get up and walk the last 100m home. Therefore most people don't need to know about this, even if I think it's kind of funny. I can edit these parts of my life out if I don't feel like trying to explain them.  

I think the issue can be that sometimes when I do start telling people more, I worry that they will misinterpret why I'm telling them. I don't want them to end up feeling uncomfortable or think that I'm expecting them to help in some way. Generally when I do tell people about a fall, or something similar, what I want is for them to laugh with me about it (and maybe make a few sympathetic noises while I process what's happened.) 

Perhaps I need to stop thinking about it in terms of whether someone is a "healthy" person or not. After all, I'm not sure of the last time I met someone who didn't have at least one struggle they're dealing with. I just need to trust that if people know me well enough for me to be telling them the full story, they'll know me well enough to know they're allowed to laugh.  

Thanks for reading,
Little Miss Autoimmune

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