When you have a chronic illness, that’s largely invisible (both the symptoms and the people who have it), difficult to diagnose, not fully understood by science and surrounded by misunderstandings and misinformation about what it actually is and how it affects people, you encounter a lot of disbelief. From friends, family, employers, doctors, the government, the media, and the general public. People with ME seem to have drawn the short straw. While definitely not the only invisible illness to be on the receiving end of such disbelief, ME is plagued by misconceptions, and as a group we are hugely marginalised and stigmatised.
I’m lucky, my family believe me. Isn’t that shocking? That I consider myself lucky because my family believe that the illness I was diagnosed with is real?! Many people are not so lucky. My friends, the ones who remain in contact, believe me (although there was the odd ‘yuppie flu’ comment when I first told people), the ones who have drifted away, I guess they don’t? While I was still working, my employer believed me. The government simultaneously believe me and don’t believe me. They believed me when I applied for ESA (Employment Support Allowance) in the summer of 2015, but they didn’t believe me a couple of months later when I applied for PIP (Personal Independent Payments), for which I am now re-applying – hopefully they’ll believe me this time. Most doctors I’ve encountered haven’t believed me, it took me I think, ten different GP’s before I found my current GP – who is great, and believes me. As for consultants, very strangely, the specialists I saw while I still lived in Edinburgh, on the whole did not believe me, but the specialists I’ve seen in the Borders, on the whole, while not particularly knowledgeable, have believed me. Note, these are not ME specialists – there’s no such thing, not around here anyway – these are the specialists I’ve seen for individual symptoms (gynaecology, urology, neurology and ENT). As for the media, it’s a mixed bag, I have seen a small handful of decently researched, accurate and sympathetic articles in recent months. Some articles contain some truth, but also a lot of misinformation, which really just cancels out all of the good stuff. Then there are the articles that are downright inaccurate, offensive and full of lies and outdated information. I don’t have much interaction with the general public due to being mainly house bound, but I do see their comments on the internet, and that is what this post is mainly about.
I have seen few illnesses be on the receiving end of so much vitriol, disbelief and mockery as I have ME. Every online article about ME will have comments from people who who don’t believe ME is real. The internet is full of trolls, I know that, and I know I shouldn’t take notice. But it’s hard. While I personally do not feel I am defined by my illness, there are far more interesting things about me, ME certainly defines my life and my ability to live it. Every single thing I do, every action, every activity, is determined by my ME, I cannot escape it, ever. Knowing that there are so many people out there who deny my existence and think it’s an excuse for laziness, it’s beyond hurtful. I’m suffering enough, I could do without having to use energy to defend myself. If these people were only found in the comments sections on the internet it wouldn’t matter so much. But these people are also doctors who don’t take their patients seriously, government workers who decide whether someone they’ve never met is eligible for disability benefits or not, MP’s who won’t stand up for their constituents and demand sufficient funding for biomedical research (my MP said it would be ‘inappropriate’ for him to interfere). Having a disabling chronic multi-system neuro-immune illness is bad enough, but because the illness I have is ME, I also have this additional layer of distress to cope with. Something that people with other illnesses don’t have. I wish I had one of those illnesses.
I had a conversation with someone on Twitter a few days ago, she has MS but had initially been misdiagnosed with ME for eight years…
“I have now been diagnosed with MS but was told I had ME for 8 years before…ME is a crappy illness as the stigma still seems to be there. I feel lucky as getting an MS diagnosis has made things easier in the medical world. In the past I’d been told “to pull my socks up” and also asked if I could give reasons for not wanting to get better.”
MS actually used to be where ME is today, in terms of perception, but then the CAT scan was invented, and suddenly doctors could ‘see’ it, and they began to take the illness, and the people who have it, seriously. We can’t see ME yet, therefore, for many, it must be “all in our heads”.
The disbelief surrounding ME is the reason why we have no treatments, no cure and no support. The government won’t invest in biomedical research for an illness, that as far as they’re concerned, is ‘all in our heads’. They haven’t learned from experience (MS), and they don’t appear to care that current research and evidence proves definitively that ME is not a psychiatric condition. Why don’t they care? Why are we so unimportant? Why is my life not worthy of saving? For me, the disbelief of the illness that has stolen my life from me, feels like the worst form of rejection a person can experience. I feel like I simply don’t matter. And it’s not just me, there are approximately 21,000 people with ME in Scotland, 250,000 in the UK, and 17 million worldwide.
When you are diagnosed with ME you are on your own – no treatment plans, no specialists and no guidance. We are diagnosed then sent away to fend for ourselves. I feel like we are soldiers that have been sent out to the battlefield with no training, lost, scared and alone. So we try to move forward, but without knowing what to do for the best. Do we rest? Do we exercise? Do we monitor our heart rates? Do we change our diet? What do we do to get better? So we immerse ourselves in research, and we realise that we have to become our own experts, no one else is going to help us here. The more we dig, the more we realise that we don’t just have an illness to deal with, we have a world full of people who are out to get us, and who are happy to let us fall down and die, and they’ll laugh as we do.
I have been collecting internet comments about ME, and some about disability in general, by the way of screenshots. They are all from random members of the public, but many people with ME do hear this crap from their doctors, their employers, family and friends, I’m in many ME support groups and forums, I hear their stories. When I tell people about the level of disbelief thrown in our direction I am, funnily enough, often disbelieved. I expect that’s because the people I’m telling, are decent and have brains. They do believe in ME and they can’t understand why anyone wouldn’t believe, I mean, the evidence is kind of undeniable, anyway, here’s some proof, and not that they deserve it, but I’ve hidden their names/usernames for their anonymity.
Aren’t people delightful!
The ‘image’ of ME has moved forward somewhat recently. Jennifer Brea’s film Unrest, the work of ME charities, the advocacy group MEAction and the MillionsMissing protests, and people like me who are blogging about our own experiences, we all help to educate people about ME. Unfortunately, something has come along recently that has the power to undo the progress we have made. A documentary series, created by DocShop Productions for Netflix, called “Afflicted”.
Ok, where to start. This is what was promised during the casting process for Afflicted…
“I am working on a documentary series for Netflix that explores the experiences of individuals suffering from chronic or unexplained illnesses. I’m looking for people willing to share their stories on-camera as part of the series. Our intention is to look at these experiences through a compassionate lens and give voice to those who are struggling for answers and acceptance.”
I should make it clear that I have not, and will not watch the series, so this is not a review. I started to, I made it ten minutes, but I stopped. I didn’t want to add to the viewing figures, and I knew, based on what I’d heard from the participants, that it would upset me too much. The day it aired on Netflix I saw one of the participants, Jamison, who has ME, voicing his disappointment, he stated that he felt he had been misled. I have followed his blog for a while, and I have no reason to disbelieve what he, or the other participants, have shared about their experience. All my knowledge about the series comes directly from the people who are in it and what I have heard from other viewers.
So, the participants of the series believed they were taking part in a project that would show their lives and struggles with chronic illness through a “compassionate lens”. Unfortunately, that is not what was portrayed in the final product. The producers went in a different direction, they deliberately went with a narrative that would allow viewers to believe the participants were neurotic hypochondriacs, suffering from psychiatric disorders, and not the physical illnesses that they were diagnosed with. They wanted the audience to question their mental health and doubt the validity of these people’s illnesses, and it worked. Here is a selection of what the general public think about Afflicted, and the people in it…
The people responsible for Afflicted turned their subjects into a joke. They had the material to create a sympathetic and factual documentary, but they deliberately omitted this footage, to create what ended up being “reality TV”. They took vulnerable and desperately ill people and turned them into a sideshow act reminiscent of 19th Century freak shows. I thought we were past disabled people being exhibited to the public as ‘entertainment’, but apparently not. Afflicted wanted the viewers to question if these people were suffering from psychosomatic illnesses, but they didn’t share with the audience any of the medical information that was provided (by the participants) that would allow them to answer those questions accurately. They held back on the facts and the science while leading viewers to believe they had all the information they needed to make informed decisions about these people, the decisions being, “these people have mental problems”. They deliberately played up to the doubt that people already hold about invisible illnesses. Please note, there is no shame whatsoever in having ‘mental problems’, I have them myself, it’s not uncommon for chronic illness to affect a person’s mental health, but these people’s primary conditions are not psychiatric in origin.
The footage and the interviews with the participants and their families were twisted and manipulated. They sneakily edited, chopped up and spliced together their dialogue, to have them say things that in reality, they did not say, they basically created a work of fiction, but presented it as fact. The production of this series was so dishonest, they fed lies to their audience, knowing they would lap it up. They told viewers that they had offered one of the women a treatment worth $25,000, and she had turned it down, for no good reason. This led people to think she didn’t want to get better, that she was revelling in her illness and simply loving the attention. In actual fact, the series didn’t include the bit where she sought advice from her medical doctors, who told her that treatment would actually be dangerous for her, and her specific condition, and they advised she not go through with it, that is why she turned it down.
Viewers were led to believe that these people have spent an inordinate amount of time and money pursuing alternative treatments, for which they have received a lot of scrutiny, you know, given they had apparently turned down actual medical treatment. But the participant’s own scepticism of some of these treatments, which were at the suggestion of the production company, was edited out. Many of these people have concrete diagnoses and test results, but these were also excluded. So much of the criticism they have recived since Afflicted aired has been based on the narrative that they, the audience, were fed, that their problems are “all in their heads”, but they wouldn’t accept that they needed mental help. What wasn’t told, was that most of them have been referred to psychiatrists or psychologists at some point since they’ve been ill, and none of them have been told that their physical symptoms have a psychiatric cause. Many of them have even, in desperation, tried psychiatric interventions/medications, which did not work, they are still ill. They even had to undergo (and pass) a psychiatric evaluation in order to participate in the show was, which of course was conveniently left out.
During the filming process the crew attended a ME symposium and interviewed leading ME scientists, but these were omitted from the final product. Rather than have their actual doctors on screen, they had a random psychiatrist, who had never met any of these people, and had no knowledge of, or expertise in their actual diagnosis’s. He was there purely to speculate about what was making them so unwell and aid the sensationalist narrative.
“They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” Something that psychiatrist man said.
This series has done unspeakable damage to the chronic illness community, not to mention the people who actually participated in the series, who have since been subject to abuse, harassment and even death threats. People with invisible illnesses already face so much judgement and disbelief, we could do without the media aiding this idea that we only ‘think’ we are unwell but actually have psychiatric problems. Would we ever see a ‘documentary’ about cancer, in which the audience is encouraged to question whether they are really ill or not? Of course not, people would be outraged if that happened. Afflicted was a sick game, it was entertainment for able-bodied/healthy people to guess what the ‘freaks’ ailments were, and they had a lot of fun doing so.
“I think that they seem to enjoy being cared for, and doted on. It gives them purpose and meaning. Folks love to play victim.” Random review from some idiot.
I’ve seen many reviews go along the same lines as this. This couldn’t be further from the truth. I was healthy, active, fit and independent, I had a great job, was travelling and life was good. Now, I’m a thirty eight year old who is dependant on her mother. My mum could tell you how much I dislike asking for and accepting help (although I am of course grateful). When I tell her that I worry about being a burden, she tells me, that if anything, I don’t accept enough help. How can anyone think that any of us enjoy this life? I get no sense of purpose or meaning from having ME, what I do about it gives me a sense of purpose (this blog), but I absolutely hate, with a passion, being ‘cared for’. And I am no victim, thank you very much!
Since Afflicted has aired, some of the participants have written about their experience, I have shared these at the end of the post. Please read their stories, especially if you have watched it, they deserve to have their truth heard.
This whole thing with Afflicted had taught me a valuable lesson. I was recently approached myself to potentially take part in a TV documentary. In May I was contacted by someone who said he worked at Wild Pictures, a UK based production company, he told me he had read my blog and wanted to speak to me regarding an upcoming documentary they were making for the BBC. I happened to have written about the subject matter (assisted/accompanied suicide and my Dignitas membership) in my blog. We corresponded via email for a bit and were arranging a time have a Skype chat, I gave him some days in the following week I could speak, but I never heard from him again. I’ve emailed a couple of times since and haven’t heard back, so I guess it’s not happening.
It’s fine if they don’t want me and my story as part of the documentary, it would have been a massive, and scary, undertaking for me, I don’t even like having my photo taken. It will also be better for my health to not take part. I thought of it however as an opportunity to raise awareness about my ME, on a massive scale, given it would be on the 9pm slot on BBC One. I imagined people watching, seeing a woman with ME, and hearing that it prompted her to join Dignitas, “wow”, they might think, “ME is obviously a more serious illness than I realised”. So I was disappointed when I realised it wouldn’t happen, a tad relieved too, but mainly disappointed.
I was also upset by this researcher’s lack of consideration, and manners. I’ve never done TV stuff before, so maybe this is normal behaviour, but it worries me that TV researchers feel it’s ok to seek out vulnerable people, who they know to be very unwell, let them feel that they are being heard, offer them an opportunity, and then just drop them, with no explanation. He could at least have had the consideration to tell me I wasn’t needed, rather than raise my hopes and then just cut off communication.
It has also crossed my mind that this could have been a scam. In the original email I received, via my blog, the researcher had spelled the presenters name (Miriam Margolyes) incorrectly, twice, something that my sister noticed and thought was a bit of a red flag. So she may have been right. But shortly after this I also received an email from Dignitas themselves (as a member I’m on their mailing list), they had also been contacted by Wild Pictures looking for people to contribute to the project. That made me think it was legit, but honestly I don’t know.
Given how the participants were misrepresented on Afflicted, I think I may have had a lucky escape here. I am happy to speak about my feelings on this subject to anyone who wants to learn, but I’m not willing to be messed around and misled and I am not willing to let anyone waste my time or my limited energy. How the researchers treat potential interviewees is likely a reflection of how they treat the people who are selected to take part, and it’s not something I want to put myself through. I don’t think I’d cope well with having no control over the final edit, or how I would be portrayed. If they misled me as the Afflicted subjects were, and I was then subject to malicious internet comments, I would be devastated, and I’m sure it would be pretty damaging to my mental health. I now realise that I cannot trust anyone to tell my story, but me.
Please read the Afflicted participants stories for yourselves.
“We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”
Their individual stories.
What other people are saying about Afflicted. (I will update this as new articles are published)
Health Rising. The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins.
ME/CFS Research Review. The microbiome hypothesis: Lipkin’s collaborative, part 1.
ME/CFS Research Review. The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion, part 2.
Stat. The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?
Belfast Telegraph. Doctors ‘do more harm than good’ sending ME patients to gym.
Nature. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics.
Sci-Hub. Are ME/CFS Patient Organizations Militant? Patient Protest in a Medical Controversy.
Health Rising. New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need.
ScienceDaily. Insights from metabolites get us closer to a test for chronic fatigue syndrome
MEAction. Denmark has some recommendations for ME…and they’re pretty awful.
Bateman Horne Centre. New Insights into Exercise Intolerance and Medication.
HuffPost. Having ME Is Like Being Permanently Encased In A Suit Of Armour.
InsideSources. The Monster Disease Medical Schools Don’t Mention.
Simmaron Research. System Reset? Study Suggests Pro-Inflammatory / Autoimmune Reset Occurred in Chronic Fatigue Syndrome (ME/CFS).
HuffPost. It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness.
CNN. Millions suffer from an invisible disease: My ME/CFS story.
Health Rising. The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and other Diseases?
Disability News Service. MPs have won praise after calling on the government to ensure disabled people finally secure equality in the protection they are offered by hate crime laws.
The Pool. The activist helping remove the stigma surrounding wheelchair users who can walk.
Questioning Answers. On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued.
ProHealth. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease Or Disturbed Homeostasis? Study proposes that stimulation of hypothalamic mast cells activates microglia leading to focal inflammation in the brain.
The Mirror. ‘I can barely walk and I’m bed-bound 23 hours a day – M.E. nearly killed me’.
The Canary. The UK’s General Medical Council just threw 250,000 disabled people under a bus.
ME/CFS Research Review. Significant association of DNA variants with self-reported ME/CFS.
Welfare Weekly. Scottish government seek ‘anti-terror’ powers to spy on benefit claimants. The powers are typically reserved for protecting the public against terrorism and serious crime.
TheMindMap. Belle and Sebastian – Going Through The Emotions. Interview with Stuart Murdoch.
ABC. ‘Your disease is real’: Breakthrough in diagnosis of chronic fatigue syndrome.