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About illness

Dealing with invisible illness

“But you don’t look sick…”

I’m sure if you’re like me, and you have, or have had, an illness that is essentially invisible, you will have heard this sentence. And you will know how invalidating and hurtful those words can be, even when the people who say them mean them as a compliment.

Two days ago, I was feeling ok and so I went into town to run some errands. Apparently I was a bit ambitious because I was in the middle of a department store when I had a sudden attack of nausea, dizziness and pain. I was mortified at the idea I might be sick in the store. Luckily, I had just been to the pharmacy, so I went next door to a cafe and got a glass of juice, and swallowed some antinausea pills. As I was sitting there, shaking, feeling incredibly vulnerable, I found myself thinking: ‘I wonder, if I tell them I’m pregnant or have cancer, will they let me use their bathroom?’

This is because I don’t feel my illness is “good enough.” Because people can’t see it, I feel that it’s not severe enough to use as a reason for what I go through or how I behave, or what I need – despite the fact it’s so debilitating that yesterday I couldn’t get out of bed until three in the afternoon.

People can’t see my pain, therefore it mustn’t exist.

This erroneous belief starts young. I remember twisting my ankle as a child. My parents could see that it hurt me, but it wasn’t that severe. Wanting the level of sympathy I felt I deserved, the level of sympathy I felt matched the level of pain I was experiencing, I took to wrapping every twisted ankle in bandages, every small cut in large bananas-in-pyjamas sticking plasters. I wanted my feelings to be plain.

Now, I’d rather they weren’t. I’d rather be perceived as strong, even though, when I express my pain, I get the care I need.

Today I went into town with my walking stick. Since I started using it, people treat me differently. More delicately. Some people talk slower (what is *that* about?) In some ways, this is nice. It is nice to have my struggle realised and validated by others. But it’s also really fucking unnerving, that I’m approached differently because people can now “see” my disability.

My walking stick is not a cane – my father made it and it’s more like a wizard’s staff. Today, two people laughed at it because, I presume, they thought it was an affectation. In a rare moment of standing up for myself, I said to them “I’m not sure what’s funny. I have to have this stick because I’m too weak to walk.”

They were very contrite. And there were those words again – “But you don’t look sick! We didn’t even know!” – followed by saccharine inquiries as to when I’ll get better.

I don’t want your sympathy. I don’t want your comments on my appearance, as if how I look is at all indicative of what’s going on inside me. My intestines are fucking eating themselves. I don’t *know* when I’m going to get better, if I knew that I’d be doing it.

If someone tells you they’re sick, regardless if they’re wrapped in bandages head to toe, or in a wheelchair, or carrying a walking stick, just accept it. You don’t need to validate or invalidate it by expressing your perception of how they look. You don’t need to ask them personal questions about how they’re coping. You don’t need to suggest “helpful” things they might be doing to get well. Believe me, they know.

Just accept that they’re sick. That’s all you have to do.

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About writehandedgirl

Sarah is a writer who is passionate about social justice, feminism, politics, and cats. She is a columnist and poet and currently lives in Nelson. You can follow Sarah on Twitter (@_writehanded_) or read more of her writing at writehanded.org

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