Able to Remember.

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There are a plethora of reasons some people use as a means to discriminate against others, such as gender, sexuality, religion, race, and of course, disability. Over the past few years it was realised that if each minority facing a particular type discrimination banded together, forming a much larger group tackling all kinds of discrimination, they would have more power and influence due to sheer numbers. As such it is now very common to see people on social media listing all the types of discrimination that they oppose, but almost invariably there is one type of discrimination absent; ableism.

I do not for one second think that ableism is omitted intentionally, simply that it is forgotten or overlooked. Many people assume that the law protects the disabled against discrimination, but the law is all but meaningless when no one bothers to implement it. Others believe that ableism is a relic of the past, or don’t see why the misuse of special facilities or the obstruction of access routes is, in fact, ableism. Others simply forget that ableism exists at all.

With ableism so easily forgotten it is no surprise that issues such as equal access to transport, particularly on trains and aeroplanes, are still such a significant problem in 2018, nor is it surprising that a very large proportion of public spaces and buildings lack wheelchair access completely. Of course, when most courts lack proper wheelchair access including into the witness box, it’s hardly as if suing someone for discrimination is feasible. Therefore the problems go on unchecked and forgotten.

I am convinced that the first stage in the fight against ableism is simply to raise awareness. Over the past few years I have met lots of new people through university and work, and nearly all of them have said that being around me and observing my daily struggles has opened their eyes to the prevalence of ableism in day-to-day life. Many of these same people have told that me that their habits would change; they would be more reluctant to use disabled facilities unless they really had to, and that they would see cars parked on pavements and get angry without me even being there.

Anyone on Twitter may have seen the #JustAskDontGrab campaign led by fellow blogger Dr Amy Kavanagh, raising awareness of how to help disabled people without invading their personal space or inadvertently causing harm. The campaign predominantly focuses on anecdotes and personal experiences to highlight the issue, and uses the Twitter slogan for the benefit of computer algorithms. Seeing the impact Amy has made started me thinking; what if I could do the same to ensure that ableism is included in the fight against discrimination?

The trickiest part for me was coming up with a social media friendly signature, particularly as I didn’t want something that sounded aggressive or accusatory as I firmly support the fight against all types of discrimination too. Indeed when I finally had my eureka moment on my evening commute, I was so engrossed in thought that I almost collided with a lamp post. Thus #AbleToRemember was born. Now all I needed was a launch date, and I could think of no better than Remembrance Sunday itself. While the soldiers who died in the various wars are honoured by this session, those who became disabled in the war are often overlooked, demonstrating my point perfectly.

Whenever I spot ableism being omitted from a list of all other types of discrimination, I will be sharing it alongside #AbleToRemember, and I want others to do the same. I’m not pointing the finger or being antagonistic; I just want to ableism to become as unpalatable as any other type of discrimination.

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Time for a Change.

Accessible public toilets are the bane of my existence and the same sentiment is felt among others with disabilities too. Considering that it is a basic human right to have access to a toilet, the difficulty many disabled people have in accessing a disabled toilet is abysmal.

In some places the disabled toilet, if they even have one, is little more than an enlarged cubicle with unsteady grab rails and a broken emergency cord. Sometimes these cubicles are nothing short of filthy, and sometimes they’re being used as storage cupboards. Sometimes they double up as baby-changing facilities creating a problem for both parents and the disabled, and on more than one occasion I have left a cubicle to be berated by an angry parent with a screaming baby for daring to use the toilet. Often enough the baby-changing facilities are not packed away properly after they have been used making it nigh-on impossible for a wheelchair user to enter the stall, and quite often soiled nappies will simply be left on the side instead of disposed of.

In most places there is also usually just one disabled toilet and should someone decide to use the disabled cubicle because it is nearer, or because they want to take a dump in peace (I’m serious, that happens a lot), that delays the person with a genuine disability from accessing the facilities they need. Sometimes people have invisible disabilities meaning that they can’t walk as far as the other toilets or they may have medical waste bags hidden beneath their clothes, so tackling people about misusing these facilities becomes a mine-field.

To combat the situation pro-actively, some establishments have taken to locking the disabled toilet and only giving the key to those who ask for it. However, as I’m sure you can imagine, trying to attract the attention of a member of staff in a busy venue is difficult and rather embarrassing. In the UK there is a scheme with a special key to unlock disabled toilets, providing they have the specific lock available. As I understand it having this lock fitted can be very expensive, so only the big businesses tend to have them.

However, if I have a tough time accessing a toilet in public, then for those who need full changing facilities it must be virtually impossible. I can count on one hand the number of places I know that have full changing facilities, and all of them are large shopping centres stocking exactly the same stock as every shopping centre in the country. The competition for a normal disabled toilet is definitely a problem, making full changing facilities little more than a myth. This forces many people to change on the floor of the stall, which as aforementioned can be cramped and dirty, making it down-right dangerous.

I admit that I can understand the concerns some venues express when talking about full changing facilities; not only do they take up a large space and need high maintenance, but they are very expensive, time-consuming, and disruptive to fit in the first place. They are also still subject to all of the issues disabled people who don’t need full changing facilities face. However, when you consider that access to a toilet is a human right, these arguments fade into futility. Western civilisation has worked so hard to provide the lesser developed countries with essential resources like proper sanitation and yet a whole portion of the population right here face a situation equally as grim.

If you don’t need to use a disabled toilet, unless perhaps all the other toilets nearby are in use, then don’t use it. If you need to use the cubicle to change a baby’s nappy, be considerate of other users including other parents. If you have an invisible disability, don’t be afraid or ashamed to stick up for yourself if you have to. And if, like me, you don’t need access to full changing facilities, try to use a disabled toilet without them if there is one available.

More Than Ramps or Lifts.

Living in the heart of a city means that everything I could desire is practically on my door step, or perhaps more appropriately, my door ramp. Therefore it should hardly be surprising that I like to take advantage of this fact and spend a great deal of my time in the various bars, pubs, cafes, restaurants, shops, and cinemas in the local area, and as such I have encountered every standard of accessibility from “I don’t think my insurance will cover that” to “world domination is nigh”. It is from these experiences that I have learned a peculiar fact, one that by most accounts would seem counter-intuitive; accessibility is about more than having ramps and lifts.

I have discovered that it is not enough for a building to have ramps, lifts, and disabled toilets; they have to be usable too. I have been in many fully accessible buildings to find ramps and corridors needlessly obstructed, lifts shut down, accessible doors locked while the inaccessible main entrance remains open, or even disabled toilets being used as storage cupboards. Sometimes facilities have to be blocked off if they are unsafe but the fact that routes are blocked is rarely communicated to the buildings users, and I have spent a great deal of my time backtracking down corridors when a simple sign at the entrance would have sufficed.

The people in charge of these buildings pride themselves on their accessible facilities, as they should, but in their pride they fail to implement them. Many a manager has failed to see why I am so adamant that blocking something accessible renders it inaccessible, or why having to wait outside in the Yorkshire rain getting soaked to the skin while my able-bodied counterpart goes inside to get someone’s attention is an issue (God forbid I ever go out with other disabled people, or worse, on my own); the general attitude is that I am making a fuss about nothing and this often means that the same mistake is made over and over again. I believe that in this attitude lies the problem.

When I attended one of my beloved wrestling shows at a new venue, an older building in an industrial complex, it was undergoing building work at the time. There was a central courtyard and on the right was a building containing the bar and the toilets which had two steps up to the door. The manager of this building spoke to me, informing me of his plans to have a concrete ramp put in along with all the other work that was going on, and also to ensure that the disabled toilet had running water supplied to it as soon as he could. On the left was the room containing the wrestling ring and the door was too narrow to pass through without leaving behind some nasty scratches on the wall, and also had a very small step down which my wheelchair may or may not have been able to manage, mostly depending on the level of sobriety of the driver. Thinking quickly the manager opened the double doors around the corner which was serving as the wrestler’s entrance, and guided us down a wide, level corridor into the room. On the way out he made sure that the passage was clear for me and my fellow compatriots to exit the event safely.

This building did not have the same resources available to render it accessible, it being an old, re-purposed building with a cheap rent, exacerbated by the building works. Despite this, the buildings’ staff went out of their way to make sure that I could get in to see the show with no major compromises, and also to reassure me that the standard of accessibility would increase. While they lacked the resources, their attitude meant that the problems were resolved to everyone’s satisfaction.

It struck me as I was going home after the wrestling show that accessibility is far more than just having the right car parking spaces, toilets, changing rooms, hoists, ramps, lifts, hearing loops, and other facilities. Accessibility is using those facilities appropriately, not misusing them, and making sure that they are available to those that need them when they are needed. Accessibility is also in the welcoming attitude of the staff who don’t make me feel like an inconvenience on wheels. Accessibility is just a visual representation of equality.

Mission Impossible 4: Looking for a Job.

It is widely accepted that job-hunting is a stressful, disheartening, and sometimes even degrading process for just about anyone. It is also known that certain groups such as ethnic or religious minorities, women, or LGBTQ+ people may find the job-hunting process even more complicated, and the same is applicable to disability.

At the start of my job-hunt I immediately ruled out any jobs that I couldn’t physically do. For example, being a personal trainer would not be an advisable career path for me. I often struggle to reach things in shops so stocking shelves in shops was out of the question. I would be a trip hazard in an industrial kitchen so working as a chef or waitress was not a viable option. This left me with office jobs. Administration. Paperwork. Pen-pushing, as some like to call it.

I then had to consider the commute; trains are just too unreliable as a wheelchair user to get to and from work, as are taxis. Buses were the only viable option, and even then rush hour traffic would make the journey long and gruelling. So I now had additional limits of suitable locations too.

I signed up to a few employment websites, and sent my CV off to as many people as I could like an over-excited puppy. A large chunk of these replied to tell me that I couldn’t work in their office because I was in a wheelchair; their office was inaccessible. One office wrote to tell me that they were equipped to take manual wheelchairs only, so if I was prepared to subject myself to agonising pain on a daily basis they would be happy to consider my application.

All these restrictions, of course, came on top of the usual expectation to have thirty years of work experience by age twenty, and to have five PhD’s to boot. This left me with an incredibly limited number of jobs that I could apply for in the hopes of actually getting a job.

The majority of the jobs that I applied for rejected me on the basis that I had little work experience, as I couldn’t physically manage to work on top of my studies. I had written for a university magazine, been a secretary of a society, and had started this blog, but most places did not consider these to be proper work experience. Only one invited me to an interview. Clearly the stars aligned on this occasion because a couple of days later I received a phone call (in the middle of the supermarket, no less) telling me I had the job. While the contract was not exactly lucrative and the wage certainly did not come to much, I was just happy to have a job.

There was a long period between finding out that I actually had the job and starting work, as there was a lot of paperwork to complete, so in the meantime I took to going out to cafes, coffee shops, or the library on a daily basis to write. I would write things for my blog or I would write articles for Cracked, the latter of which I received a little money for. As someone who gets bored quite easily and is then an absolute nightmare to be around, the writing aspect of my life quite literally saved me from going completely out of my mind.

Little did I know that after only seven months in my job I would be let go. It was suggested that I continue working for other administrative roles in the NHS, but given that most of these were in an inaccessible office and the remaining shifts were so few and far between as to amount to nothing, it was far more viable to pack it in altogether. At least this way I would have the relevant paperwork to hand, hopefully meaning that when I did eventually land a new job, half of the paperwork would already be complete.

Even though I only have a little work experience to date, I was at least offered multiple job interviews throughout this second period of job applications. However, as I got negative result after negative result, I became increasingly disheartened. Then, one Monday afternoon while sat tapping away at my keyboard in the local geek hidey-hole, the phone rang. I had got a job, but not just any job. I would be joining one of the top medical research facilities in the country as a data management assistant, which was nothing short of my dream job. Now all I have to do is not mess this up.

Mission Impossible 3: Find a Home.

As the end of my time at university approached Jarred and I began the search for our very first home together. Limited by budget and location as well as wheelchair access we were prepared for a difficult and stressful experience, but even our strong cynicism could never have prepared us for what lay ahead.

The first hurdle came in the form of the letting agents, or rather the lack of accessible letting agents. I was entirely dependent on Jarred to go and speak to the letting agents face-to-face, and because of this the letting agents would always contact Jarred before me despite the fact that I would be the one paying the deposit and administrative fees. I couldn’t tell if this was because I was a woman, disabled, or simply because I couldn’t get into the office, but it was frustrating none-the-less.

Over the Easter break in 2017 a flat within our budget and desired location became available for viewing. The day before we were due to visit the flat Jarred found the building while doing some shopping in the city centre, so we wouldn’t be late for our appointment. To his dismay he saw that the main entrance to the building had a large step in the door, despite reassurances from the letting agent that the building could accommodate a wheelchair. Fortunately the receptionist saw him standing outside with a bemused look on his face and came to his aid. Jarred explained his predicament and the receptionist kindly showed him the accessible route into the building; down a steep ramp into the garage beneath the building, where a lift was situated next to the stairwell.

The next day we went together to view the flats on offer. We were on time and the receptionist let us in through the garage, and we met the letting agent in reception. We took the lift to the fourth floor and travelled along the narrow corridor to the furthest door. The flat was a small bedsit with the kitchen immediately on the left as the door opened, and the bathroom on the right. The lounge was at the opposite end of the kitchen, with the bedroom next to it, and all the rooms were connected in a loop. It was tiny and although it could fit the wheelchair in, it was a tight fit.

Not convinced, we decided to look at the other accessible flat on offer which was facing the bedsit. The door opened onto a short corridor that could comfortably accommodate my wheelchair, even with a shoe rack in it. On my right was the bathroom, which I could move around in freely in my wheelchair, and the bedroom was also accessible. Finally we went into the lounge/kitchen/dining area which was spacious and light. The electric meter and bin store were down a step but I could manage these on walking sticks if Jarred hadn’t got to them first. It was just within our budget, in the perfect location, and could accommodate my wheelchair without too many problems so we immediately put the deposit down on the flat.

After this came the paperwork, which was the most complex stage of the process, particularly because the letting agent said they needed me to sign the papers in person, insisting that I go to the office to do so. They refused to come out to the flat as a meeting point, despite this only being around the corner from their office, and eventually they compromised by letting us sign online versions of the documents. Then Jarred went to collect the keys.

Jarred was given two sets of keys for the flat, including one for me which included access to the garage. Unfortunately while the garage key worked, the key that allowed access to the lift from the garage was an old key that didn’t work. Jarred’s keys did not work on this door either, and it took a lot of arguing to convince the letting agent that I couldn’t simply rely on Jarred to go through the main door (which worked) to run downstairs and let me in from inside the building. They seemed to have no concept of my desire for independence, or the fact that I would be coming and going under my own steam more often than with company. Fortunately I had had the foresight to ensure that there was a week’s overlap from our old apartments to our new one, so I simply stayed in my old apartment for a few days until the issue was resolved.

I think this whole debacle emphasises how difficult it can be for disabled people to be independent, whether that be due to inaccessible buildings or the general attitude that those with disabilities are incapable of independence. Obviously I say this as a wheelchair user, but I’m certain that those with other disabilities are subjected to a similar attitude themselves.

A Broken Record.

“I don’t know how you cope.”

“I couldn’t do what you do.”

“How do you manage? It must be so difficult.”

Like a broken record I hear these sentiments on an almost daily basis, and while they are a compliment of sorts, what strikes me most about these statements is the apparent lack of faith the person saying them has in themselves. This is by no means a criticism, as I was guilty of doing this myself prior to becoming disabled, although it can get a little awkward when a total stranger approaches me to express this sentiment in the middle of the street. Contrary to popular opinion, disabled people still have places to be.

If someone had told me that I would get meningitis, develop CFS, become increasingly dependent on a wheelchair, become very depressed, have to fight for my education, and then to have gall stones and surgery during the final year of university, I would have panicked. I would not have been able to comprehend going through all of that and still managing to have some semblance of a life, and what’s more, actually be happy about it. Yet here I am, spread-eagle on the sofa eating chocolate chip cookies, writing about it. I’m not exaggerating.

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It is our resilience and adaptability that has allowed humans to become the dominant species on Earth, and it is those same traits that have allowed people with chronic illnesses and disabilities to live fulfilling lives. It is pretty difficult at times, I won’t deny, but I’m not special for being able to withstand it. Most people would be able to withstand everything I have dealt with and more besides, especially if they were supported by a few friends and family members like I was.

It isn’t just illness either. People have the same reaction to all sorts of difficult scenarios; miscarriages, being a single parent, going back into education while raising a family, surviving a string of bad luck, the death of close ones. They express how they couldn’t cope. While these situations are troubling and difficult, I have watched those around me go through trying times and even if they need some help to do so, almost without fail they cope. What first-hand experience has taught me is that humans are essentially the mammalian equivalent of cockroaches; stubborn.

Afflictions of the Afflicted.

The recent Netflix series, Afflicted, follows seven sufferers of various chronic illnesses as they search for effective treatments that could enable them to live relatively normally. This group of sufferers was extremely small and all of the cases were very severe, hardly presenting a representative group of chronic illness patients to look at, but the show could still have helped raise awareness and public understanding of these conditions. However, instead of doing this the participants have been subject to increased ridicule and disbelief, which has then spread to chronic illness sufferers in general. The backlash from people like myself who suffer from chronic, disabling illnesses prompted me to watch the show and briefly investigate the stories of the show’s subjects. My personal feelings made it tough to watch, but as a scientist I was able to somewhat distance myself from my emotions, and to analyse the poor research and presentation of information that dominated the show.

As I pick apart the poorly managed editing and illogical blanket statements made by arrogant doctors, I half hope that the people who produced Afflicted get to see this, and if nothing else can learn from my observations.

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Episode 1: Toxic World.

In the opening montage a few medical experts are seen giving their thoughts on chronic illness. The only problem was that the medics did not have backgrounds in chronic illness diagnosis and treatment, predominantly coming from psychiatric and psychological departments, with a specialist in infectious diseases added for some inexplicable reason. No researchers or doctors with experience relevant to chronic illnesses appeared throughout the entire montage, setting the tone for the rest of the show.

One of these doctors told his interviewer that if he didn’t understand the cause of the disease or symptoms, then they must be psychological or simply faked for attention. Clearly this doctor hadn’t done their research beforehand, or perhaps they would have noticed the plethora of research exploring the physiological and biochemical reactions associated with the diseases, often centring on over-active immune systems responding to things they shouldn’t be. It is also incredibly arrogant to believe that medical research has provided all the answers and that we know everything there is to know about human medicine. I might also point out that at one time, we didn’t understand what cancer was, unless of course he would like to presume that the symptoms of cancer are faked.

The doctors went on to denounce alternative therapies but of course refused to suggest anything to help the patients, leaving them with nothing but desperation instead. Some of the participants had to take drastic measures, in one case this involved moving to a quiet zone to escape the city-levels of electromagnetic radiation that were causing the sufferer a great deal of distress.

About half way through the episode we were introduced to Jamison, who I identified as an M.E sufferer long before it was confirmed. There was a very short clip of him cleaning his teeth when his grip suddenly loosens on the tooth brush, his eyes slide shut, and his head lolls momentarily, almost as if he had lost consciousness. Having seen myself do that in the bathroom mirror on countless occasions, I knew it was M.E. Of course some of the medics had less than positive statements to make about M.E, stating it was a description of symptoms and not a full diagnosis, seemingly questioning the legitimacy of the illness in doing so. Little did I realise this had only scratched the surface of the lunacy to come.

Episode 2: Support.

The family and friends of the participants were interviewed in this episode, and on the occasions where the interviewer can be heard asking the questions, it should be stated that the questions were extremely leading and biased towards particular answers, including whether they doubted the patients sincerity in the number and scale of their symptoms. The disbelief and doubt shown by friends and family only served to reaffirm the disbelief and doubt of strangers who seem dead-set on making the miserable lives of those who are sick even worse. Medics and carers often doubted the patients too, and when one had to visit the hospital and explain her illness the nurse physically rolled his eyes in exasperation, something which I have experienced myself.

The patients wandered from doctor to doctor, desperately searching for a medic who not only believed them, but was also knowledgeable about the disease and its treatment. Time and time again these patients were set up with a glimpse of hope only for it to come crashing down. Some of the specialists even had the nerve to provide placebo treatments while charging the patient extortionate amounts, stating that the placebo effect was better than nothing and that few actual treatments would work without the belief that they would help to begin with. What wasn’t shown was the length of time between each visit to a new specialist, which could be months at a time left alone to live with a brutal illness without any help at all, only adding to the misery of the patient.

Once again the show visited M.E patient Jamison, who explained that he preferred to call his illness M.E as CFS (chronic fatigue syndrome) gave an unrealistic impression of the disease, making it sound like only a little fatigue and over-looking all of the other symptoms. It was explained that M.E and CFS are interchangeable medical terms, despite the desire of some to separate the terms in order to distinguish M.E from CFS, making it feel more legitimate as a disease; they are the same disease according to medical research, in any case.

A supposed specialist came to visit Jamison, giving a long lecture on how M.E was an inaccurate name because that implied swelling of the brain, something not always present in patients with the disease despite them displaying the same symptoms. He then went on to say that Jamison’s symptoms did not match up with those of M.E, despite the fact that they did in fact match up almost perfectly with those studied in research papers. Of course, once this pointless lecture had ended, he left offering no support and no alternative diagnosis, leaving Jamison bed-bound but with less money in his pocket.

Jamison Afflicted

Towards the end of the episode a montage of medics explained how mental trauma can have physical manifestations, which in itself is not a false or misleading statement. However, they went on to give very physical examples of trauma such as a car accident, failing to realise that these incidents had physical manifestations due to physical injuries. These montages certainly did not help the cases of the patients.

Episode 3: Identity.

Of all the episodes, this was the one to anger me the most. The opening montage discussed the contentious issue of identity when suffering a chronic illness, with one medic going so far as to claim that chronic illness became such an integral part of people’s identity that they no longer wanted to get well, implying that it was their own fault for their prolonged suffering. Again, the fact that there are no cures or effective treatments was ignored; how can someone not want a cure that doesn’t even exist?

Chronic illness changes people’s identity because it usually results in massive changes in lifestyle to accommodate new treatments and avoid triggers. Just as religion becomes integral to someone’s identity, so does chronic illness. The isolation, loss of friends, failure to achieve dreams, and the constant battle with doubt and disbelief even from those closest to you would change even the most stoic of people, and chronic illness often erodes away people’s lives until only their illness is left. It is not a choice to be given this identity, but is one imposed upon us by a society who believes every single one of us to be collectively part of the biggest conspiracy theory humanity has ever seen.

When it comes to lifestyle changes one of the largest and most complex is dietary change; as someone with a 1st class honours degree in nutrition from a top university, I should know. Star, who suffered from a plethora of conditions accumulating in great discomfort, was shown discussing her diet with a formulist. That formulist just so happened to be spouting information that was downright false, bordering on dangerous. Another patient decided to go to a chronic toxicity clinic; anyone who has studied toxicology in some form will know that it is virtually impossible to study chronic, low-level toxin exposure due to the inability to measure the intake of these toxins, the inability to account for the effects of different exposures (i.e. inhaled, ingested etc.), and the inability to account for the interactions between toxins. If their effects cannot be studied, how is it even possible to offer someone knowledgeable treatment for chronic toxicity? The answer is, it isn’t. However, when these people are the only ones willing to help those with chronic illnesses, when everyone else turns them away, what choice do they have in who gives them medical information?

Episode 4: The Mind.

Let me start this section by stating that even the most experienced philosophers cannot fully fathom what exactly the mind is, and how it differentiates from the physical brain (if it even does differ). Therefore any speculation put forth by irrelevant medical experts is simply a waste of breath at this point, but breath was wasted regardless.

Once again viewers were subjected to a medical montage of mind-blowing stupidity masquerading as intelligent commentary. One of the doctors explained how he believed that all of these chronic illnesses were simply different manifestations of one psychiatric disorder, calling patients of these illnesses delusional. Of course, how one disorder could result in such a wide range of physical effects (including the fluctuation of symptoms) was completely ignored, as was the fact that delusions can be treated with medicines and therapies, unlike the chronic illnesses in question.

When interacting with patients, doctors and nurses were shown to have a complete disregard for any symptoms reported by the patient, ignoring them and leaving them in pain to discover at a later date that something was seriously wrong all along. The answer “I don’t know” was seen as sufficient for any questions asked by the patient, leaving these people clueless as to what was being done to them and their bodies, a truly terrifying experience.

One interesting point raised by a doctor whom I actually agreed with concerned the phrase “in your head”. It is possible that these chronic illnesses result from chemical or physical damage in the brain, causing neurones to dysfunction and synapses to misfire. The damage could physically be “in someone’s head” without it ever being psychological, and from my knowledge of physiology and scientific research, I would be wager on this being the case at least part of the time.

Episode 5: The Cost.

As a UK citizen I am fortunate enough to have the majority of my medical costs covered by the NHS, and I don’t have to worry about insurance companies failing to recognise chronic illnesses or the few treatments available for them. I was both fascinated and horrified to see the American participants literally bankrupting themselves going from doctor to doctor in an attempt to receive help, taking gambles on alternative treatments that may or may not work regardless of the cost. The financial stress can only have worsened the symptoms of the sufferers, and also made access to care much harder as carers were required to take on extra work to support themselves.

A point I hadn’t considered was the fact that no one ever saves up for chronic illnesses. Having some money available in case of an injury like a broken leg is sensible, but in most cases that cost will be a one off foray into misery, rather than a constant onslaught of medics hell-bent on ripping someone’s livelihood to pieces.

The episode was only really ruined by one psychiatrist, who decided to let the world know that chronic illness patients were faking symptoms (as fluctuating symptoms couldn’t possibly be physical, because no one making this show had ever met a cancer patient before) for pity, and in particular financial gain. However, most toddlers could grasp that the books simply don’t balance in this case, and the show skipped over this moment in the hope no one would pick up on its blatant idiocy.

Jake Afflicted

Episode 6: Mind and Body.

The psychiatrist Armageddon troop returned in full force in this episode, declaring that it is possible to imagine something so hard and so deeply that it becomes real. This statement is not false, but is entirely irrelevant to the discussion of chronic illnesses, as if this were true psychiatric medicines and therapies would be effective cures. It is indeed true that psychological burdens can worsen chronic illnesses, but as to being the cause I remain highly sceptical.

As the episode progresses it is shown how relationships between friends and family can suffer when someone has a chronic illness, with one father seemingly incapable of any form of compassion judging by his interviews even, claiming that relationships were impossible under the circumstances. The breakdown of relationships and inability to form new ones can only add to the aforementioned psychological burden, but everyone seemed to blame this entirely on the chronic illness patient, rather than recognising that a relationship is a two-way commitment that they are partially responsible for. I suppose it is easy to blame someone for everything when they are totally unable to defend themselves.

In this episode we finally met a doctor who was extremely experienced and educated when it comes to chronic illnesses, and who actually offered proper support to her patient (albeit at a substantial cost). In an interview she explains how modern medicine has become so bloated with the over-abundance of relentless information that many doctors have simply forgotten how to process and use that information, particularly on a patient-by-patient basis. Given the lack of bedside manner in all of the medics previously shown in the series, I can only agree.

Episode 7: Well.

The final episode of the series tried to give everyone a happy ending, which as any chronic illness patient knows, is far from reality. Most people never fully recover, although some may get better but not completely well, and an unfortunate few will see their health declining until they die while doctors stand above them arguing about whether they’re faking it.

Many of the shows participants wished to return to functional; able to live a relatively normal life among society, and not having to constantly deal with pain and exhaustion. It is safe to say that someone’s perception of health is very much altered by chronic illness, and priorities change. Health is no longer about maintaining smooth skin and firm muscle tone, and more about being able to work and have a family.

Due to the fact that these diseases are complex and multi-faceted it often takes many different treatments to reach the stage of functional wellness, and for Americans that means a large amount of money too. Sometimes the need to eradicate one symptom has to be prioritised over another, a very difficult decision to make. The show fails to demonstrate the amount of time, effort, money, resources, and cooperation that is needed to undertake this process, instead portraying the effects as more of a sudden miracle. This only adds to the scepticism displayed by our doubters.

It should also be said that treatment can mean many different things; it could be drugs, physical therapies, psychological therapies, or it could be less conventional as in the case of functional medicine. This is the manipulation of a patient’s environment to make them feel better, and indeed diet can fall into this category. The avoidance of triggers is perhaps the most imperative aspect of functional medicine, but it is virtually impossible to filter out all of the mould, spores, or chemicals that are causing patients so much misery. Sometimes the drastic measures needed cost too much, or are too impractical, which only serves to emphasise that not everyone gets a happy ending.

The Participants.

Having watched all of the series I decided to do a little digging and look into the stories of the participants of the show, to see what they make of the carnage.

The participants had wanted to raise awareness for their conditions and perhaps even to promote research; the problem seemed to be with who was involved with the management of the show, and the way it was edited.

The experts interviewed were rarely experts in chronic illness diagnosis, treatment, or research, giving uninformed and irrelevant opinions that gave a false impression of the participants. Current physiological understanding was left out, as were the concrete tests and diagnoses patients received in place of the alleged self-diagnosis. The fact that the patients had tried conventional treatments, including psychological treatments, was brushed over, leaving out the fact that they had tried these things in order to get well and had found that they all failed. Similarly, their scepticism before being subjected to alternative therapies was overlooked, as was the fact that these were invariably a last resort.

It didn’t help matters that throughout the series the participants were asked to provide details of their illness and treatments; given that they lacked the medical vocabulary of the doctors treating them, the explanations came across as vague, ill-thought out conspiracy theories, rather than the medically-sound explanations they actually were.

TV

In conclusion, this show was poorly researched and poorly edited to the point where I suspect the director and producer in charge did not believe in these illnesses and wished to mock them instead. Leading questions were used in interviews, important information was excluded, irrelevant opinions were included and presented as facts, and the participants were in no way representative of chronic illness sufferers in general. This appalling display of arrogance and self-assurance deserves every criticism it receives, and I hope that the creators of such sensationalised propaganda can learn from their mistakes.