Friday, 19 August 2011

"You're not Robinson Crusoe"

Right now, I'm lying on the couch, feeling sick.  I had plans for today - I was going to go to my church's adult fellowship meeting this morning, and then my local Curves in the afternoon. Instead I'm wrapped up in my soft blanket - the one my dog and cat both insist on sharing, with an upset stomach.  This isn't lupus - I can tell because my 17-year-old is similarly wrapped up on the other couch, complaining of an upset stomach.

Anyway, this is giving me time to read some of the sites that help remind me I'm not alone.

Today, I'm reading The Lupus Magazine. One of the articles that took me by surprise was by Annessa Ann Babic. Among other things she talked about was nosebleeds.  I've never heard or read before that this was part of lupus - but most of my childhood and teenage years I was plagued by nosebleeds.  I had the arteries in my nose cauterised three times. She also talked about bruising - and I have always bruised easily.

This is stuff I never knew had any cause, it just seemed that I was particularly unlucky. And, it didn't help with my social life - it's hard for a kid to make friends if she spends all her time with something over her face soaking up blood. Of course, my lupus was not diagnosed until I was 40 - so all of the strange things that happened to my health until that point were just not put together to add up to anything.

When I did my first degree, the radio and television production lecturer used to tell our class, every time we made a mistake: "You're not Robinson Crusoe." We heard this so much time that we called ourselves "Robinson Crusoe Productions" in one of our film assignments.

The thing with lupus is that, it's easy to feel like Robinson Crusoe sometimes. It's easy to feel that no-one else knows what it's like - that the things I have been through only affected me. What I love about sites like The Lupus Magazine, and But You Don't Look Sick is that they remind me I'm not Robinson Crusoe. When I'm having a bad day lying on the couch, someone else is too (not just my son.) If I spent a ridiculous proportion of my childhood mopping up blood as it poured from my nose, someone else did it too. If my toes feel like iceblocks, even when the rest of me isn't all that cold, someone else's does too.

There's an entire community of people with lupus and other chronic diseases - a community that goes past national and cultural boundaries - united by our common experience.

For all of you, whatever site I've found you on, I'm glad you're out there. I don't feel alone. Thank you.

1 comment:

Thanks for being part of the conversation.

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