Social Media vs. Reality: Behind the Scenes With Sickle Cell Patients

A powerful billboard campaign reveals what sickle cell disease looks like

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by Dunstan Nicol-Wilson |

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I would love to go on one of the Bali swings I always see on social media and then capture the moment. However, my friend informed me that the reality is that there are long queues and it’s not as good as it looks in photos. The reveal of the many edits it takes to get a final amazing picture reminded me of the modern-day dichotomy of Instagram versus reality.

It’s easy these days to build a different reality online from the one that’s actually happening. I’m not judging, as I think everyone does it to an extent, myself included. For example, on my journey to becoming a sickle cell advocate, I consciously decided to share only happy moments on social media.

I frequently speak about the struggles of living with sickle cell disease and how it affects my daily life on different platforms. I share posts of other patients’ experiences and advocate for more blood donors. However, on my personal Instagram, you will mainly see my best bits — the holidays, the birthdays, and the happy times.

You could say my reality differs from my social media posts. I am not always by a beach, although I wish that were the case. Each day, I battle with myself to have more good days than bad ones with sickle cell. The world doesn’t see the medications I take or what I look like during a crisis.

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I made this decision because I felt the narrative around patients with sickle cell disease was negative. In the community, negative stereotypes seem to dominate my surroundings: Sickle cell patients are always sick. Sickle cell patients can’t do anything.

I wanted to show the other side of that reality while being open about my struggles. The objective is to shed a positive light on what it means to live with the disease.

Putting reality in the spotlight

On a recent journey home, I was taken aback by a sickle cell disease poster on the London Underground that showcased both realities. As part of a campaign for Sickle Cell Awareness Month in September, Sanius Health has erected over 350 billboards in the U.K. featuring side-by-side photos of real patients on their good and bad days with the disease.

This was the first time I had seen such a public display of sickle cell patients’ pain. The imagery was powerful because I could relate; it was another interpretation of my reality. The pictures show what happens behind the scenes for all patients with sickle cell.

I recognize the vulnerability it takes to share your lowest moments during a crisis. With sickle cell, I’m often enduring or recovering from another low point, and it takes a lot of courage to put that out there for the world to see. I am still working on feeling comfortable with it. I am used to putting on a brave face and downplaying the internal chaos of a crisis.

These billboards have challenged me to think about my vulnerability and how to convey the reality of this disease. I’ve found a way to describe life with sickle cell through my talks and columns. These images enhance that description. Behind the scenes, my reality is very similar to the reality of the patients on the billboards.

Sharing this reality aids in spreading awareness of sickle cell disease and the need for blood donations. As always, I’m super proud of those in the community who are finding new ways to increase awareness. This campaign challenges the negative stereotypes in a powerful demonstration of what our good and bad days can look like.

Like everyone else, our real life might look different from what’s on social media. But for us, sickle cell is what lies behind the scenes.

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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