My subcutaneous immunoglobulin infusion pump, as I was setting it up for the first time. I infuse 50ml twice a week.

As I encounter more and more people I need to succinctly explain my illness more and more often. I think I’ve got it down to a few reasonably quick but accurate descriptions which I can choose from depending on the situation:

1) I have a muscle problem which makes me weak, but my cane helps with that.

2) I have a neuromuscular disease which means my body doesn’t always respond properly. There are good days and bad days but I’ve learned lots of ways to manage it.

3) I have a neuromuscular disease called Myasthenia Gravis, which means “grave muscle weakness.” There’s a communication problem between my nerves and my muscles.  It fluctuates so sometimes I look normal and other times I struggle more. It’s a little similar to MS but the nice thing about mine is that it doesn’t degenerate as I get older.”

…And so on.  

This past week, thanks to an out of town meeting with many work colleagues and multiple rides with curious Uber drivers, I found myself accessing these scripts multiple times. As I went into it for what felt like the tenth time in two days I realized that every form of the conversation includes a very specific component – some form of consolation for the listener.

Even on the day I had to call an Uber to leave work midmorning because I could no longer type or lift my feet to take a step, I tried my best to keep things upbeat when my driver asked about it.  Four long clear tubes snaked out from under my shirt and connected to a little backpack I was wearing as we drove. I was in the process of pumping myself full of other people’s antibodies and yet I was still trying to give the impression that this illness doesn’t impact my life too significantly.

Why do I do this? Why do I need to comfort the people who ask about my illness? Why do my explanations always end with a note that makes it seem “not that bad”?

I do it because I can see that people become uncomfortable as I share my diagnosis and answer their questions about my daily life and the struggles brought on by this disease. 

I do it because although I  generally feel like I’m coping and that my life still has more good than bad, in those conversations I see myself through others’ eyes and it is depressing. I hate seeing my life through others’ lenses as they’re assessing it for the first time and so I try to colour it positively.  

I do it because reducing the emotional impact on others helps manage the emotional impact on myself. 

One thought on “Consolation

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