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When Sensory Overload Comes With Lupus

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Living with autoimmune and/or chronic disorders means you have many little symptoms that you often lump into the autoimmune life and just get on with it. I actually call it “The Lupus.”

I’ve been thinking about sensory hypersensitivity and sensory overload which people with autoimmune disorders such as lupus, fibromyalgia, chronic pain and migraines often experience. I’m talking about the “I can’t bear the light,” “I can’t bear the touch of bedsheets on my skin,” “please don’t hug me,” “I see sound,” “I smell colors,” kind of sensory mess.

For some people, it is mild. For me, it can be disconcerting. I remember telling my boss that the day before I’d get a migraine I experience synesthesia, and she found it so interesting. Mid-explanation, with her looking at me with such fascination, I found myself wondering, as I often do when I have to explain synesthesia, if she had come to the conclusion that I have some kind of mental illness. It kind of is. My synesthesia makes me see sound, which can be so disturbing I need to be in a dark, very quiet room until it passes.

So my neurologist has been asking loads of questions at every visit to just see how I’m doing. As of last week my body has rejected the meds planned to deal with the nerve and sensory issues, and I’m of the opinion I’ll be OK somehow.

So he asks, “What music are you listening to?”


“I mean, have you got a new album you are listening to. What’s your daily playlist?”

I have not been listening to music. Any music. At all. For weeks. In fact, mum chimes in, I get irritated when she plays the Original Songs album. Because you can’t really say no to that, apparently I always close my bedroom door.

This is how chronic illness affects you. By changing the little things and shifting things around with the pain and discomfort you don’t even recognize yourself anymore. So if you are not aware of it, you can seem like the most grouchy, ungrateful person in the house.

You might think that because you try not to think about your illness, that you don’t talk about it as much as Juliet does about hers, that your chronic illness does not consume you. But its in the little things. Look at the little things and how they affect you, how you deal with your life, and your people.

Getty Image by GlobalStock

This story originally appeared on She Blossoms.

Originally published: July 19, 2018
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