It dawned on me that I had not written any new content since May. It’s been a while you could say perhaps? So, I hope as you read this you are OK. I was inspired to put my fingers to the keyboard following several articles that have triggered some feedback from me. It was a documentary that sparked anger and probably as much as when people believe exercise will improve fatigue. On Saturday afternoon, whilst resting I found ‘sickness and lies’ which left me with rage to the point I write this today. Brace yourself.
With 15m people in England alone living with a long-term condition, and numbers rising, it’s no surprise the chronically ill community has exploded online in the last few years. In 2017 after my diagnosis I realised that similar to fashion and beauty, the online community was flooded with bloggers living with similar conditions to the one being proposed. I recall, watching Nic Chapman discuss her MS diagnosis shortly before my experiences of chronic illness. We were entering a time, where people were being honest with not just their mental health but their physical health too. We live in a time where your tribe may be online just look at the celebrities like Lady Gaga, Selena Gomez and Lena Dunham who are opening up about their conditions, and chronic illness influencers are attracting huge social media followings. I am one of them. I have lived with ME and peripheral neuropathy for four years and so I consider myself as a writer within the chronic illness community. I felt that nerve-related conditions were rarely discussed and I wanted to speak openly to provide support for the person in my shoes in the future. There are few patients my age with nerve damage so I do find myself isolated with little understanding of what to do to make myself better or give myself my full life back. Yet, the debilitating condition is being put into the spotlight as other conditions are – that people are lying about their conditions. The documentary titled ‘Sickness and Lies’ told the story of several chronic illness influencers being accused of faking their condition to receive paid partnerships, support and mass engagement. Some of whom were legitimately poorly yet the few who lie about their condition make the rest of the community fall into the trap. Within all genres, there will always be the one person who exaggerates their condition to receive further support or treatment but this is a minority, not a majority yet I fear the documentary focused on those who were caught and has without a doubt, emphasised a community that faces much disbelief and ignorance.
It is a very well known fact that those living with ME for example have faced medical gaslighting. A technique that many consultants fall into the trap of doing; this is where they proclaim their patient’s pain or problems are all psychological leaving patients with limited sources of support. The disbelief will no doubt, continue with the documentary highlighting the few who are mentally unwell. I have found that neurologists, in particular, want to put anyone with a normal test result into a category of ‘mentally unwell’ this type of diagnosis means they can transfer you to the pain clinics. A method which is becoming more apparent as we come out of the pandemic and more experience long covid. With a majority of chronic conditions displaying clear or normal test results, patients are left banging their heads against walls and sadly I fall into the category of feeling like a fraud on a daily basis. The documentary wanted to examine how many patients are living with the condition, Munchausen’s syndrome. This is a psychological disorder where someone pretends to be ill or deliberately produces symptoms of illness in themselves. Their main intention is to assume the “sick role” so that people care for them and they are the centre of attention. The condition was at the centre of Run, the film released in America on Hulu to later be available globally on Netflix. The thriller played out the story of a disabled child who was being abused by her overbearing parental figure that reflects a trend of tales for both real and fictional carer abuse. The abuse fell under ‘Munchausen by proxy. Munchausen syndrome by proxy (MSBP) is a mental health problem in which a caregiver makes up or causes an illness or injury in a person under his or her care, such as a child, an elderly adult, or a person who has a disability. Because vulnerable people are the victims, MSBP is a form of child abuse or elder abuse. But, back to the documentary before I turn into a Guardian film critic. I would like to believe this documentary was created to highlight the few who are faking it with detrimental consequences to themselves and their followers but somehow the messaging of the documentary failed to achieve the supposed aim. The majority of the film focused on those living with legitimate conditions who were being accused of lying about their condition rather than those who did pretend and were caught.
As a chronic illness patient, I finished the documentary feeling angered and frustrated. For me, I have described chronic illness to be like being innocent but being treated as though you’re guilty. It is common and this documentary I fear is only going to egg this notion further until patients in genuine pain and suffering do not come forward for diagnosis due to the fear. In a way, it feeds the discrimination patients like myself living with an invisible condition face due to not physically appearing unwell. However, I don’t want to dwell on the negatives and problems with the documentary because it related closely to the earlier documentary examining ‘Bella Gibson’. A blogger who claimed healthy clean eating cured her incurable brain tumour. Years later with millions to her name, she was exposed as a fraud with no proven history of any cancers. This controversy exposed the ways some individuals have and will continue to take advantage of the system. We have to understand, that there are people with genuine pain, suffering and disability who are being overlooked and being failed by the system. I would direct your attention to the benefits system where several chronically ill patients are neglected.
As you’ve read this post, you may be confused or wondering why I would spend the free time I have to write such a piece but it has to be done. 2020 saw some major changes come forward in the understanding of post-viral fatigue, virtual socialising and working yet we are still years behind understanding the ways you can be sick and look poorly plus how a condition can fluctuate from the morning until the afternoon. Documentaries like this one, have been created with the belief it would expose the fraud but instead has left an already misunderstood community fragile and angered by the assumptions or planting a seed that has been flourished by claims such as this. We have to change the narrative between chronically ill patients and the media but society. Too many patients are being let down because they 1) don’t look sick enough and 2) have good and bad days there are two tropes that dominate the dialogue between patient and doctor and will continue to do so.
To friends, family and colleagues who read this. I know you will never truly understand my medical file because I live with consistent pain and numbness because it’s hard. However, understand that I will never define myself as the sick one, or want to intentionally miss events, parties or gatherings because of my condition. I have learnt in four years how listening to my body is the only way for me to manage such a condition. I have to understand my limits and my ability. Day by day hour by hour. I know, what I did yesterday or what I did four hours earlier may not be replicated. I live in the knowledge that I do not know the future of my condition or where I may be next year.
If you live, love or work with a person living with an invisible condition such as Fibro, ME or MS please reach out to them. You can learn and start to support. You don’t need a medical qualification to offer support or validation to your loved one’s experience.
You can watch a snippet of the documentary here