Image credit: Nahis.Org (Nahypothyroidism)

Social has a bit of a rep. Particularly in 2018. From fake news to echo chambers and data privacy scandals. And yes, when social is bad, it is usually pretty bad. But when its functionality is applied by and for those in need of genuine help and support, it can also facilitate so much good.
Consider the bullet points below for example. They could not be more opposed to the current mainstream media mood towards social as a public communication channel:

  • Construction of social and real-world support communities
  • Development of formal and informal communication platforms
  • Establishment of meaningful condition-specific friendships and connections
  • Priming of advocacy and representation
  • Cultivation of understanding, self-help and self-regulation
  • Support towards the elimination of stigmas and misinformation
  • Sharing of authentic and identifiable experiences
  • Driving perception-led societal and policy change

They are in fact just some of the wonderfully life-affirming (and network-affirming) behaviours we discovered around the role that social media play for sufferers of (3 particular) invisible illnesses: Endometriosis, Inflammatory Bowel Disease (Crohn’s and Colitis) and Myalgic Encephalomyelitis (M.E.) / Chronic Fatigue Syndrome.
Read on for more info on our look into the social behaviours adopted by those affected by 3 particular invisible illnesses in the UK, a subject particularly close to our hearts here at DI.

Endometriosis, IBD and M.E. are all very different conditions, but they can all be classed as ‘invisible’, leading to unique challenges for those dealing with them. There can be a stigma surrounding their symptoms which, as identified by some endometriosis sufferers, could be one of the factors preventing timely diagnosis:

‘I can remember when periods were covered in my primary school c1984. The boys were sent to play football’

‘The average endo woman waits seven years for diagnosis precisely because of people discouraging dialogue so we need to have these conversations’

‘If three of my friends hadn’t discussed their periods with me I wouldn’t have known to ask the doctor about potential #endometriosis which explains why not only my period itself is HORRENDOUS but also the two weeks prior. This needs to be talked about’

Better communication is clearly identified by the community as a solution to end this stigma and silence.

But it’s not just fear of stigma that’s the problem. There is also, for some sufferers, a constant battle to be believed, particularly for endometriosis and M.E. In fact, this was a motivation underlying a huge portion of the conversation about M.E. in particular:

‘I have CFS and I often get judged for not getting up for ppl. When I do that I’m actually running on fumes and can’t stand up for long. It’s those days you take showers sitting on the floor’

‘“You don’t look sick”. The dreaded words those of us with chronic and mental health problems hear too often.’ 

‘I’m still struggling to get anyone to listen to me about my suspected endometriosis’

Social media could provide a platform on which these frustrations can be heard, and where clear communication about potential symptoms could help lift the stigma that still surrounds them.

Fundamentally, social media, and Twitter in particular, is a place where people can share stories and experiences, whether personal testimony (in standalone tweets, by engaging in Twitter threads and with hashtags, or in a more structured way by sharing blogs and vlogs), from official voices (e.g. engaging with campaigns from @EndometriosisUK), or from sharing other media such as news and magazine articles.
This active ‘story sharing’ has various effects, including but not limited to:

  • Information exchange
  • Providing representation for sufferers
  • Establishing community
  • Informing & motivating campaigns

Social media, therefore, is a tool being used by those struggling with these conditions to not only do the crucial work of establishing community with each other and enabling access to practical and emotional support, but also to motivate practical change in wider society.

Social Media as Information Exchange
Some sufferers of invisible illnesses turn to Twitter for practical guidance and information on managing their conditions, including coping mechanisms, pain management, advice on treatment and surgery, or advice on navigating necessary bureaucracy:

‘An assessment suggested a wheelchair hoist for the car, so I can get out & about more. Currently it is putting both me and my carer at “high risk” getting in and out. it cost around £1,600+ does anyone know any grants available for this kind of thing?’

‘Anyone who’s had a #laparascopy still find issues with your scars?’

‘also use a hot water bottle for endo flares, but find the hot water bottle can exacerbate the pain’

Actively sharing personal experiences of living with these illnesses results in practical advice being posted, hopefully reaching some of the people who need it.
Social Media Provides Representation for Sufferers

Topic cloud for #MyIBDHistory, via Brandwatch

For all three of these conditions, Twitter is a rich source of personal testimony for those living with them. For example, the hashtag #MyIBDHistory was popular among sufferers of IBD, and was started and promoted by an individual rather than an official organisation. These stories mostly focused on medical histories, particularly on their journeys to diagnosis and current treatment. The popularity of this conversation shows that people welcomed the opportunity to share, and that those stories were valued by those in the community:

‘I was reading some of the tweet stories late into the night – some tragic tales, but an eye-opening insight into individual lives and treatment impact’

Sufferers of invisible illnesses also felt empowered to be completely open on Twitter about their struggles, sharing sometimes highly detailed information about their daily lives:

‘Actually feel horrendous today. My crohns really plays up in the heat and gets me tired and feeling sick’

‘sitting doubled over and sobbing in pain.’

‘I just want to sleep more & avoid food as it makes me so poorly. I’m still quite worried’

‘CFS has taken absolutely everything away from me, education, friends…Functioning is a very distant memory. I hope you manage to find something that works for you’

Twitter has an additional string to its bow here – the ease of sharing links and articles on the platform. It has therefore become a tool for sufferers to share other articles, including blogs and vlogs, about the illnesses:

‘I’ve just done a video on the daily struggles of having endometriosis!…For me it has meant depression, not being able to go out with friends, restricting what I can eat or drink, RIDICULOUS pain and more. It is so much more than just a painful period’

‘After spending the last 3 days in agony…its important for me to remember I’m not alone in this constant battle’

(in response to an article published about endometriosis)

 Sufferers value seeing representations of the illness with which they can identify. This can be hugely emotionally significant for them:

‘the knowing collective nod of every women in that audience was such a amazing thing to observe. Literally the only book I’ve ever read that mentions endometriosis’

(re: a book that includes a character with endometriosis)

‘10/10 appreciating @bbcthree raising the awareness of endometriosis the agony I’m in rn puts your mind at ease knowing you’re not alone #1in10’

‘Been trying to devour this book because fragments of it could have been written about me & I’ve been desperate to find out if the main character has endometriosis. I’ve just reached the page where the Dr tells her she does & I’m crying cos when do I ever see this in fiction?’

Social Media Supports Community
Deep, lasting community relationships can be built via Twitter, where these communities are making a huge difference to people’s lives:

‘The online #IBD community are what made me! Saved me even’

‘Just one example of how my body tries to sabotage me on a regular basis…But at least, we’re not alone. Thank u for reaching out…#endosisters’

‘I know it doesn’t help but I know exactly that pain’ 

‘As warriors we have to stick together’

In some instances, this community extends beyond the illness itself – with some who are part of the IBD community sharing details about other aspects of their lives and establishing what appear to be real friendships with each other online.
People on Twitter use strong language here e.g. warriors, #endosisters, showing how important this kind of empathy and support is to them. Twitter is effectively functioning as a support network for those struggling with these invisible illnesses.
Social Media Motivates Campaigns

For all of these diseases, social media provides a place for people to mobilise, organise and hopefully bring about practical change.
For inflammatory bowel disease, the campaigning conversation is more focused on fundraising activity such as sponsored runs, but recent news stories also sparked conversation about government policy or current issues that may impact sufferers e.g. the expansion of the blue badges scheme and access to disabled toilets for those with invisible illnesses. This is obviously a particular concern for those with IBD.

‘My father had and ultimately died of Ulcerative Colitis. If he could’ve used disabled spaces he may have had a much better quality of life’

‘As a Crohn’s sufferer I don’t think I need a blue badge in its current form. But when driving, should an emergency stop be required I’d like to be able to stop and park without fear of getting a fine’

‘Not sure that even if I was eligible for this that I would use it, people still get funny seeing people with hidden illnesses using the disabled toilet, hopefully this will change though’ 

For those with M.E./CFS, campaigning and advocacy were a huge focus of the conversation, much more so than for IBD or endometriosis. They are highly engaged with current debates about the illness, as well as policies and research both in the UK and abroad. For many, it is a highly emotive topic, which can be political and controversial:

‘Stop pretending an evidence-rich physiological disease is psychological & due to fecklessness’ (sharing a petition)

‘My Son has been through the appeal system twice in the last few years just because the assessment is a complete set up. He has ME( Chronic Fatigue Syndrome) and the questionnaire he fills in isn’t even relevant to his illness. This is the first thing that should be looked at’

(re: disability benefits)

‘Am * so * grateful for the NHS, it’s a gem, & simply irreplaceable – sadly, though, patients w myalgic encephalomyelitis (ME), have bn neglected & poorly served since ME was conflated w chronic fatigue in late 80s/early 90s. I do hope this will change w new @NICEcomms guideline’

For IBD and M.E., social media is used as a tool to share information about key issues and motivate campaign content where appropriate.

Word cloud for #whatiwishilearned, via Brandwatch

However, Twitter can be used more directly to provide impetus for a campaign. @EndometriosisUK’s #WhatIWishILearned campaign is a perfect example of this. Crucially, it is plugged into practical action – a wider campaign to improve endometriosis education in schools.
By engaging sufferers around this hashtag, Endometriosis UK succeeded at encouraging personal testimony (which can be extremely powerful), making sufferers feel like they are actively contributing to make things better, harnessing practical ideas on how to improve education and gaining insight on the key concerns felt by those currently diagnosed with endometriosis. For example, a repeated concern was a lack of understanding of what constitutes ‘normal’ with periods:

‘#whatiwishilearned pain which causes you to vomit is not normal, being anemic is not normal, doubling up on sanitary protection is not normal… these were early signs which were played down by professionals- be persistent, get answers, get help’

‘I wish I’d been taught the symptoms of endometriosis, instead of being led to believe the pain and fatigue was normal’

‘I wish I’d known that having to change sanitary protection every hour and popping paracetamol all the time was not normal’

This reinforces the importance of the campaign – better education on endometriosis – and also practically tackles the silence that has existed surrounding it.
People need stories, and sufferers of invisible illnesses are no exception. Whether these stories are personal testimonies or fictional accounts, it is crucial for people to see themselves represented somewhere and to build communities with other people in similar situations. Social media provides the perfect platform to accomplish this. The above analysis has shown that Twitter can help to construct a solid community, establish relationships and support between individuals and can lead to campaigning and advocacy, hopefully resulting in lasting, societal change.
As ever, it is the people behind the tweets who are motivating this action, but Twitter is the tool that they are using to achieve this. It is a place for community, a place where marginalised groups can be represented, find others in similar situations, and mobilise and organise campaign activity to, ultimately, make the world a better place.
This research was powered by Brandwatch.
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