INVISIBLE ILLNESSES

Social Listening Report

INTRODUCTION

An invisible illness is an umbrella term for any medical condition that isn't easily visible to others.
This includes chronic physical conditions like arthritis and diabetes— but also mental illnesses.

Although there are diseases where the main symptoms tend to be visible and well documented,
there are often many underlying symptoms that are overlooked by HCPs and society alike.

It’s important to break the stigma surrounding invisible illness where there is a
common assumption that if a disease is not visible, then it is not taken seriously.

Having invisible symptoms can make everyday tasks such as going to the supermarket, catching the
bus or going to the park extremely difficult and potentially embarrassing for people. It is important for
people to become educated on this in order to reduce judgement and increase funding for charities.
INVISIBLE ILLNESS STATISTICS

A huge 96% of illnesses are invisible.1

+ Over half of people living with invisible illnesses

are from the working age bracket. It is therefore
important for employers to become educated on Of people suffering with a chronic invisible illness,
the impacts of invisible illness and provide the 60% are between the ages of 18–64.1
necessary support.
+ Invisible illnesses also seem to have a negative
impact on personal relationships, shown by the According to the National Health Survey, the divorce
increased divorce rate. If there was more rate amongst chronically ill people is a massive 75%.1
awareness of the mental impacts, maybe we
would see less divorces and healthier personal
relationships with family, friends and partners.
74% of people who suffer with a disability do not
use a cane, wheelchair or any other visible aid.1

1. https://www.agencycentral.co.uk/articles/2017-02/dealing-with-invisible-illness-at-work.htm
SENTIMENT

+ When conducting a search on ‘Invisible illness’

and ‘Invisible symptoms’ online, 32% of social
Positive 7%
media posts had a negative sentiment,
compared with only 7% positive posts.
Sentiment Negative 32%
+ On average there are 300 mentions per
month. Neutral 60%

+ Most frequently used keywords online were:

- Depression
- Anxiety
- Chronic pain

- Mental health
- Disability

Search carried out in October 2020, for mentions between 31st July 2020 – October 29th 2020
A SENSE OF COMMUNITY

+ Social listening analysis revealed a sense of

community between people with invisible illnesses.
+ People are sharing insight into their experiences,
top tips for coping with symptoms, and generally
raising awareness.
+ As the COVID-19 pandemic has made it difficult for
support groups to meet face-to-face, we’re seeing
a rise in virtual discussions and support groups as a
replacement. This increase is being reflected on
social media.
+ Although most posts hold negative connotations,
some aim to empower those with invisible
illnesses, like the one below.
VOCAL ADVOCATES

+ There are many advocates of invisible

illnesses online, across social media
channels as well as personal blogs.
+ Many people have a desire to be
heard and understood.
+ These posts often generate large
engagement – unsurprisingly, when
you consider how many people are
struggling with invisible illnesses.
INVISIBLE ILLNESS AND LACK OF SUPPORT

+ Although there is a lot of support online within

the communities, there is frustration with the
government over the lack of education and
awareness of invisible illnesses.
+ ‘Ableism’ is often mentioned when discussing
this frustration. This refers to the discrimination
in favour of able-bodied people.
+ Can we change the educational curriculum
in schools at an early age to improve our
understanding and reduce stigma?
MORE UNDERSTANDING IS NEEDED

+ One of the most engaged with tweets we found

came from a medical student.
+ The student implies that doctors have made a
comment about the ‘invisible illness’ they have,
and tweets abouts it sarcastically.
+ People are extremely unhappy, but not surprised,
in the comments.
+ They are openly sharing stories where they have
been discriminated against, and it seems to be a
bonding experience, where the community is
coming together to change negative perceptions.
ETHNIC MINORITIES WITH INVISIBLE ILLNESSES
+ When conducting a search specifically for mentions of ‘ethnic
minority groups’ and ‘invisible illness’.
+ There were not many posts in the search thread. This may be
due to the stigma that is deeply rooted in many Black and Asian
communities regarding illness generally. Research conducted
by Demand Diversity highlights healthcare as a taboo subject
for ethnic minority groups, with illness seen as a ‘weakness’
and not discussed.
+ The posts that were shared show a clear negative sentiment
(42% negative compared with 1% positive) towards ethnic
minority groups and their experience with invisible illnesses.
+ The vast majority feel ignored, pushed aside and are 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 participants.
PUBLIC TRANSPORT

When searching ‘Invisible illness’ / ‘Invisible disability’ and

‘Transport’, there were surprisingly limited mentions – 147 Twitter
and Facebook mentions, down by 63% compared to last year.
This could be due to the COVID-19 pandemic as people have been
restricted from using public transport.
+ The posts are generally of a negative sentiment. People discuss
the stigma and embarrassment they face when using public
transport as people don’t understand their invisible condition.
+ The screenshot shows a conversation about how those with
invisible illness much prefer to make their condition visible in
some way, to avoid the negative judgment.
+ The use of disability badges are discussed – there are mixed
opinions. Some people like them as they help to avoid awkward
conversations, whereas others don’t like to feel ‘singled out’ by
the badge.

Search from January 1st – November 13th 2020

AWARENESS CAMPAIGNS
+ Social listening revealed many people are involved
in campaigns to raise awareness for invisible
illnesses. These campaigns are often shared on
social media platforms.
+ It seems it is not just individuals, but organisations
who are creating these campaigns – for example
Pelican Healthcare with their inspiring
#BeTheChange campaign.
+ Most campaigns are disease/condition specific –
rather than campaigning for invisible illnesses
generally, for example, the ‘Wear Blue for ME’
campaign.
+ The content used in campaigns varies, but it seems
a majority focus on using pictures of people getting
involved, and personal stories from individuals with
a specific illness. Some even include their campaign
within their social profile pictures and bio’s.
INSTAGRAM

#invisibleillness – 1.8m posts

+ There is a very strong sense of community
through the relevant hashtags on Instagram.
+ Notably the majority of posts are from females. #chronicillnesswarrior – 401k posts
People are typically sharing an ordinary selfie of
themselves looking healthy, but in the description,
they discuss the pain and illness they are dealing
with on a regular basis.
#chronicillness – 3.4m posts
+ There are often motivational/relatable quotes shared
on Instagram to spread positively and
encouragement. There is a sense of ‘you are
not alone in this’ through these posts.
#chronicillnesscommunity – 21k posts

Searched on November 6th 2020

BLOGS / PODCASTS / RESOURCES

+ As well as campaigning,
many people create blogs
and resources where they
share personal stories about
their experiences with
invisible illnesses.
+ The aim of these resources is
to further encourage and
empower the community –
with the goal of raising
awareness in society.
INTERESTING FINDS

THE LYME MUSEUM

+ The Lyme Museum was created with the idea to make
invisible illnesses visible, literally.2
+ They encourage people to express their invisible illness
with objects, pictures and colours to tell a visual story.
+ By physically seeing the illness, people can empathise
and understand it more.
+ We are seeing more and more innovative projects like
this with the same common goal.

2. https://www.thelymemuseum.org/news
CONCLUSION
WHAT WE HAVE FOUND:
Social listening revealed a strong and growing community
of people campaigning for invisible illness recognition.
+ People use social platforms to be heard, as they feel
society does not yet listen and accept them.
+ Black, Asian and Minority Ethnic groups express the
additional barriers that invisible illness cause in healthcare,
as well as in everyday life.
+ Advocates express concern over the attitudes of HCPs –
If they don’t take invisible illnesses seriously, then who will?
+ Innovative projects and campaigns are on the rise,
in an attempt to make the invisible, visible.
+ Instagram appears to be used to find like-minded
people to get reassurance that you are not alone,
whilst raising awareness.
FUTURE IMPLICATIONS:
+ Although the online community is
vocal and loud, there is a clear lack of
awareness across society. Allies must
champion the community's efforts to
also spread awareness.
+ On top of this; organisations must
accommodate for invisible illnesses in
the workplace. Schools must educate
children about the impacts of invisible
illness at a young age. HCPs must receive
training to best treat patients.
+ 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.