What it’s like making an invisible illness visible to others

I feel the strain of all the times I've had to explain my sickle cell symptoms

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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I’ve been reflecting on what it means to have an invisible condition. Sickle cell disease is often called an invisible illness because you can’t immediately see it and it’s poorly understood. Life would be easier if people could tell that I had sickle cell and not make assumptions based on what they initially see.

A few months ago, I had my car repaired at a garage here in the U.K. As I stood near the front desk, the receptionist asked why I was registered as a disabled driver because I looked fine. She then said she’d been trying to get into the same scheme for years and questioned how I’d lied. 

This was insulting and presumptuous, but I had the patience to explain that I had sickle cell and what that meant. The receptionist seemed embarrassed by her assumption. I overcame my initial hurt to describe something I’ve been explaining my whole life.

It doesn’t get any easier, however.

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I Will Keep Fighting for Greater Awareness of Sickle Cell Disease

Each time I explain, I see the listener’s initial ignorance change to shock and shame. Not all disabilities present as some people in society expect to see them, and I feel there’s always an assumption about how my sickle cell should look. On my bad days, I need support to walk; on my worst days, I need a wheelchair. If I don’t present this way all the time, however, my pain and struggles are dismissed. Society seems to have its own perception of what disability should look like.

I thought I’d dismissed this incident at the garage and moved on. But it stuck with me. Just because people can’t see how my red blood cells get trapped in vessels, or how I’ve crawled on the ground for help, that doesn’t mean it hasn’t happened. But many don’t believe me because of how I appear. The struggle to be trusted about your truth is hurtful.

Speaking my truth

For my first in-person public talk after the pandemic began, I shared for the first time what it looks like to have a bad crisis in a hospital. It was a vulnerable moment because I’m used to presenting myself on good days. Here, however, I needed to show my entire reality to convey how living with sickle cell affects me.

I also had to ensure that my words would resonate with the audience. When I looked around the room as I shared the picture of me, I could tell it drove home the point I was trying to make. I laid myself bare to ensure that the audience would go away remembering what it means to have sickle cell.

That vulnerability comes at a price, however. After the talk, I went to the back of the room and just sat there to recover from what I’d just shared. I was relieved that I’d done well in my presentation. But there have been other times when I’ve had to explain my symptoms and expose everything for people to understand. It’s challenging to reveal such a vulnerable part of me; it leaves a mark, and I need time to mentally get over it.

If sickle cell wasn’t so invisible, would I still have to do this?

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


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