What you can do to help make invisible illnesses more visible?

Despite a huge 96% of illnesses being invisible, there’s still a lack of understanding around them and improvements that need to be made to support those living with them.

Living with an invisible illness

While there are some conditions where the main symptoms tend to be visible and well documented, there are often many underlying symptoms that are overlooked by healthcare professionals (HCPs) and society alike. As a result, this has led to a stigma around invisible illnesses, that I’m sure you’ll agree needs to be broken.

There’s a common assumption that if a disease is not visible, then it can’t be that bad. But invisible illnesses are just as serious as the visible ones; the symptoms can make everyday tasks, such as going to the supermarket, catching the bus or going to the park, extremely difficult and potentially embarrassing.

So, what can we do to help make invisible illnesses, more visible?

Insights into invisible illnesses

This blog gives you some real insights gained from social listening, showing you what life is like for people living with invisible illnesses, and some tips on what you can do to help make a change. Below are some key themes for you to get an idea of what we found, and if you want to read more in-depth findings, the report at the end of this article gives further details.

#1 There is a sense of community on social media

The social listening analysis revealed a sense of community between people with invisible illnesses; people use social platforms to be heard, as they feel society does not yet listen and accept them.

They use social media to share insight into their experiences, top tips for coping with symptoms, and to generally raise awareness. And although most posts hold negative connotations, some aim to empower those with invisible illnesses.

#2 There are many advocates of invisible illnesses

Across both social media channels and personal blogs, there are many vocal advocates of invisible illnesses, who have a desire to be heard and understood. For example, here’s a couple of tweets we found, aiming to raise awareness of invisible illnesses:

“Invisible illnesses are real, say it louder for the folk at the back.”

“More people than you realise are silently suffering from invisible illnesses. This is a reminder to practice kindness, you truly never know what pain somebody else could be carrying. Be more mindful.”

Posts like this often generate large engagement, which is unsurprising when you consider how many people are struggling with invisible illnesses.

#3 Despite support online, more education and understanding are needed

Although there’s a lot of support online within the communities, there is frustration over the lack of education and awareness of invisible illnesses.

One of the most engaged tweets came from a medical student, which sarcastically explained a comment that doctors have made, and implies more understanding is needed, even for HCPs:

#4 Ethnic minorities feel ignored, pushed aside and are tired of feeling ‘unbelieved’

There were not many posts when searching specifically for mentions of ethnic minority groups and invisible illness. This may be due to the stigma that is deeply rooted in many Black and Asian communities regarding illnesses in general. Previous research conducted by Demand Diversity highlights healthcare as a taboo subject for ethnic minority groups, with illness seen as a ‘weakness’ and not discussed.

However, the posts that were shared show a clear negative response towards ethnic minority groups and their treatment towards invisible illnesses (32% negative sentiment compared to 7% positive sentiment), with the vast majority feeling ignored, pushed aside and tired of feeling ‘unbelieved’.

Sadly, this is similar to what previous research has shown, where ethnic minority individuals feel that they are not heard in healthcare at large. For example, we know there is a huge lack of diversity in clinical trial populations.

#5 People are determined to make a change with awareness campaigns

Innovative projects and campaigns are on the rise in an attempt to make the invisible, visible. Many people are involved in campaigns to raise awareness for invisible illnesses, and these are often shared on social media platforms. It seems it is not just individuals, but organisations who are creating these campaigns, too. For example, Pelican Healthcare with their inspiring #BeTheChange campaign.

Opportunities for future support

Overall, social listening revealed a strong and growing community of people campaigning for invisible illness recognition. Although this community is vocal and loud, there is still a lack of awareness and understanding across society. Here are a few things we need to consider to help invisible illnesses, more visible.

1. Spread awareness: Allies must champion the community’s effort to also spread awareness.
2. Improve understanding and education: Organisations must accommodate for invisible illnesses in the workplace, schools must educate children about the impacts of invisible illness at a young age, and HCPs must receive training to best treat patients.
3. Support charities: More funding is needed for charities and organisations to continue to make positive change in society, and to make the world a little bit easier for those
   with invisible illnesses.

The community of those living with invisible illnesses need help to make their voices louder and their experiences to be seen, in order to make a change. If you want to read more in-depth findings from our social listening analysis, take a look at our report below. And if you have any comments or questions, just let us know!

Blog was first published here.