Social media ‘Chronic illness influencers’? Are they there to raise awareness or for more sinister reasons?

A new kind of internet and social media influencer has been born, the ‘chronic illness influencer’ and some are attracting huge followings

So says the Octavia Woodward on a BBC News article entitledSickness and Lies this week which so far sounds ok, isn’t it great to see more chronically ill and disabled people on social media? Isn’t it liberating to see how they handle their conditions or how they cope? I would definitely applaud it but after seeing the video article, there seems to be a much deeper darker side to this story.

There are millions of people in this country who have a chronic illness and the figure is increasing, especially amongst young women we are told. We are also told of how there has been a virtual explosion of disabled people on Instagram and other social media thus giving rise to the new title of “chronic illness influencer“. But also according to the article, there are some chronic illness influencers who are only doing it for attention or they do it to compete amongst themselves to show how many conditions they have and in some way, how ‘disabled‘ they were.

There’s even a Reddit group called “Illness Fakers” who decide who is actually genuinely affected and who (in their opinion) was not.

The people interviewed about this group were often chronic illness sufferers themselves, which is an incredible and completely bizarre concept where these influencers call out and inspect other similarly placed influencers to judge whether or not they’re ‘genuinely’ ill or disabled.

I could hardly believe what I was hearing. As a disabled woman with a severe chronic pain condition, I cannot comprehend of other women/men/whoever judging me on what I choose to present on my social media posts.

Is social media ‘real life’?

No, of course it isn’t. It’s the tiniest snapshot of someone’s life and in my humble opinion, as a community, we have enough doubt and suspicion dumped on us from the medical and the government departments as it is, we certainly shouldn’t be bitching and pulling people down amongst ourselves!

For many chronically ill or disabled people, social media has became a source of friendship, kinship, camaraderie and community. Of strength and of company, a chance to talk to someone with the same issues and problems as you. During the lockdowns, it was the perfect place to spend some time, to share with your ‘tribe‘ how you were feeling or how your day had gone or how to cope with your pain, your fatigue or your sadness.

Chronic illness influencers are not in it for the money, for the exposure or for the fame. We put our lives out there to get help for ourselves and to draw in and help fellow sufferers. I take umbrage with the term ‘influencer‘ in this context though, I am not an influencer; I do not want to make you buy anything through my posts, I do not want to influence anyone with anything except that I want to perhaps change the way you think about disabled people.

So that you see that we are worthy human beings and just want the rights and privileges that non disabled people already have. That’s the influence I want, I want to highlight the need for stepped access in places that you hadn’t thought of or not to tie up the red cords in disabled toilets so that if someone falls they can pull the cord for assistance.

The influence to stop people like Jennie Berry (@wheelie_good_life) suffering when she fell in the shower of her hotel room when the seat broke from underneath her. The red emergency cord was tied up to the ceiling (!) so she couldn’t call for help and when she finally did manage to find a way of doing so, having to go through the indignity of being naked and in pain and then having to be manhandled back into her chair. Watch her heartbreaking video here

This is the influence that I and virtually every other blogger/campaigner/influencer wants.

🚫 Not monetary gain

🚫 Not fame

🚫 Not to be there for ‘attention

But programmes/articles like this are so damaging and social media is teeming with annoyed posts.

As chronically ill writer and blogger @lifeofpippa_ says on Twitter “Struggling to articulate how horrified I am at a platform like @BBCNews posing a question like this. And trust me, anybody who thinks being a chronic illness influencer is the route to fame and money has clearly never been self-employed with a debilitating health condition”

@autisticJJ adds “speaking about our lives with chronic illness does not make us ‘influencers’, we are just being open about our life and speaking our truth

@chroniciconicj confirms “I would like to make clear that the title “chronic illness influencer” entirely undermines the reality of the exhaustive work disability advocates like myself do to shed light on our realities

Vic Stamp @lifewithspoons has an interesting comment too “This reinforcement starts with the title. Sickness and Lies emphasises that there are lies.It’s not called ‘Sickness and Accusations of Lying’ or ‘Sickness, Lies and Accusations’ or even ‘Sickness and Lies?’. It doesn’t suggests questioning if the ‘lies’ are false accusations

Dr Froo with a view @T_Ellul is damning in her criticism “Dear god, just watched the whole of the @BBCNews documentary on chronic illness ‘fakers’ (had only seen clips before now) and it’s worse than I thought. Just using the term chronic illness ‘influencers’ casts suspicion from the get go, as does language like ‘supposed illnesses. The general narrative is confused and it’s never clear exactly what the point of the doc is except to portray the online chronic illness community as a dark, suspicious and unhealthy place (spoiler: it really isn’t).I’d expect this from abled journalists but that this has come from a disabled reporter is heartbreaking

But unfortunately, these types of articles and programmes just tend to reinforce disabled people’s fears and worries, as Samwise @thesamwisest concludes “

Posts like the ableist BBC article about chronic illness & disability influencers” “faking” are why I have been an utterly depressed lump of anxiety & tears all week. I’m at my limit being told I fake it, that I’m expendable, that I’m not worth society keeping alive”

What a truly dreadful message to be giving anyone, let alone a disabled person who has to face challenges everyday just to have and live an ordinary life.

BBC, whilst we understand there is an obligation to report the ‘truth‘, this should’ve been a more balanced report surely?

This has set the cause of putting disabled people’s equality at the forefront of the discussion back years in my opinion. The old trope of disabled people? ‘All malingerers and scroungers‘ is well and truly back and alive, gee thanks………