NO ONE FAKES CHRONIC ILLNESS

MIK SCARLET

COLUMNIST

Follow Mik on Twitter @MikScarlet

NO ONE FAKES CHRONIC ILLNESS

As I type this, there is an outcry about an article written by a “journalist” that claims that many people living with chronic illness are faking it to gain attention and social media followers. Where to start with that one, eh? I have to point out that, yet again, I am in the throes of a period where my health is less than what I would hope. Like so many who live with chronic illness, I am facing the loss of friends, the strain on my relationship and waving goodbye to much of the work I once did. If I hadn’t just started a job as co-CEO with the charity Phab I’d be in serious financial trouble - another element of chronic illness that so many face daily. I’m living with a level of pain I wouldn’t wish on my worst enemy, and this has led to a real crash in my mental health.

I saw the outcry on social media before I sought out the offending article. I won’t state what it’s called or who wrote it as I don’t want anyone who hasn’t seen it to seek it out. I was trembling with anger by the time I finished it. Where do I start? What struck me first was the key theme was that there’s this new group of people, women, who are supposedly called “spoonies”, who use social media to decry their tragic lives with chronic illness for followers and likes. As well as a nice dose of ableism, it’s loaded with misogyny. It claims that a person the “journalist” found had cured their chronic illness with exercise and positive thinking. I wonder, did they try yoga and healthy eating, too? It left the reader imagining a growing community of fakers who all need to get out, start cycling, and stop enjoying being ill. First, join me in a scream. Let the rage out.

Now, let’s look at this realistically. I’ve lived with chronic pain since 1981, which has touched my life on and off since I had an attack of what would now be considered some kind of postviral condition when I was a teenager recovering from glandular fever, with it getting unmanageable a few times during the years, and when I catch an illness like the flu. Currently, I’m stuck back in the grips of chronic illness as my spine is collapsing causing problems with pain and function, which is not fun. The pain is so bad that I haven’t left the house other than going to the hospital for many weeks. I’m lucky that each of these periods ended thanks to successful treatment, but I still faced a battle to get back to what I would call healthy after each dip in my health. Each time, my life stopped. My world has shrunk to my home, then a few rooms, and eventually to my sofa and bed. I relied on others for everything and was stuck unable to do very much for myself. I at least had doctors working to do something to resolve the issues, and there was talk of an end of the symptoms, or a lessening of them at least. So many people who live with chronic illnesses don’t have this, and are even disbelieved by the medical community. No one would fake being ill, but if they did, that would make them ill anyway, as faking illness is a mental health condition, and a serious one, too. Within the chronic illness community, these people are not the norm. The norm is people struggling to get by, day after day, living with a list of symptoms that most non-disabled, non-chronically ill people could never imagine. If they had a moment of what chronically ill people live with, they’d buckle in an instant. That’s the truth. The article talked of young women filming themselves crying about being so ill as if this was for attention. Excuse my language: bollocks. I’ve been in tears on countless occasions in the last year as my condition worsened. The reason people film this and post it is to allow others to know it’s OK to be sad, depressed, or lost at being so ill for so long with so little support. The chronically ill community on social media is an essential lifeline for so many and what should have happened was an article championing this and praising it. I know it’s been amazing for me and all I can say to others living with chronic illness is there’s no way anyone would fake what we’re going through for clicks and followers. Leave that to low-rent journalists. Know you are seen, respected and loved. You deserve better and I for one will be your champion in the future. Having glimpsed into your world for short periods, I know your truth. Keep on going, and ignore those who go for the easy tropes.

“It left the reader imagining a growing community of fakers who all need to get out, start cycling, and stop enjoying being ill. First, join me in a scream. Let the rage out”