Pulling a Healthie.

If we’re all being totally honest, we’ve probably tried to pull at least one sickie (pretending to be ill to avoid school/work) at some point. I know I have (sorry mum). It’s said that sick leave costs companies billions every year, almost as much as a CEO’s monthly bonus, & that people pulling sickies probably contributes quite a lot to that. However, in the modern age of oh-look-there-goes-the-economy-again, a new & opposite problem has arisen. People are going to work when they are sick, potentially spreading infection to their colleagues & reducing productivity.

This little quirk of the modern age, where super lazy millennials drag themselves into their three underpaid jobs to be able to pay the rent on their rabbit-hutch apartment, has been named Presenteeism.

Obviously, you’re probably not going to be working at peak performance by coming into work when you have the flu, & even worse, you could spread your illness to colleagues. There’s nothing quite as dreadful as watching a cold work its way around the team like a snotty game of Russian Roulette, knowing that eventually it will be your turn to wake up feeling like a frog vomited in your nose (not that I know what a frog vomiting in your nose feels like). For the sake of any colleagues who may be more at risk from infections, it is definitely inadvisable to crawl into the office. If it came to it, remotely working from home is now an option for most offices anyway.

However, during a recent discussion about presenteeism, I distinctly felt some ableist undertones creeping through. The person speaking made no distinction between coming into the office with a temporary illness & coming in with a chronic illness. I had to sit at the back of the room listening to a speech about how sick people couldn’t do the same quality of work as healthy people, & had to bite my lip. By her definition every day I came into work was a day of presenteeism, & I was costing the company substantially for it, even if that wasn’t what she explicitly meant.

While not everyone with a disability or chronic illness can work, those of us that can should not be held back by the presumption that we’re all the same. The notion that we’re less efficient & more costly makes it nigh-on impossible for disabled people to find work. However, with the help of a government scheme, staff support, & my own experience of chronic illness, I have managed to adapt to the role of Data Management Assistant. After some teething issues I am now performing at & above the required level, which is closely monitored, & am easily keeping up with my colleagues. I may be sick but I can do my job, & do it well.

Fortunately, I am lucky enough to work somewhere that when I gently reported the ableist interpretation of presenteeism, I was listened to & instead of being told to stop whining (a genuine response I have encountered more than once), & my feedback seems to have been taken seriously. In future the distinction between temporary & chronic illnesses should hopefully be made when discussing presenteeism, & that I count as a success.

You probably shouldn’t be pulling sickies, however tempting.

You definitely shouldn’t be pulling healthies, if you’ve got the flu.

That said, if you have a chronic, non-infectious illness that can be worked with, the notion of presenteeism shouldn’t disadvantage individuals searching for work, which unfortunately is the current situation.

Perhaps, instead of blaming employees for spreading illness to others, we should be blaming the era of austerity that allows CEO’s to be paid 133 times that of their employees. But what would I know? I’m just a lazy millennial.

Know It All.

Every so often I encounter a doctor who was simply born for their role; knowledgeable, competent, & with an excellent bedside manner. Admittedly I see that many doctors that at some point it was bound to happen. Anyway, during a recent appointment with such a doctor, he sighed, looked at me, & said;

“I get the feeling you’ve been told there’s nothing we can do for you for most of your life, but again, there really isn’t anything to be done.”

I almost cried.

Not because there was nothing to be done about a particular symptom that, if I’m being honest, doesn’t reduce my quality of life by any significant margin. I almost cried because it was one of the first times a doctor hadn’t tried to soften the blow by pretending to offer some woefully ineffectual “treatment”, but had recognised that, unlike Tom Cruise, I could handle the truth.

I happen to live with multiple conditions that are nigh-on impossible to treat beyond symptom management, & even then the symptoms can only be lessened rather than eliminated altogether. As such, I’ve become very accustomed to hearing doctors desperately clutching at straws to make it seem like they could cure me, when the simple truth was that they couldn’t. I don’t know whether this behaviour stems from a certain arrogance that some doctors have, or whether it is something that is taught during medical school, but it is a rarity to hear a doctor admit that they don’t know.

The truth of the matter is that doctors simply couldn’t hold all of the information about all of the diseases in the world in their heads, even within specialised fields. Sometimes, they’re going to need to look something up, do some further background research, or consult with another professional, just like in any job. Unfortunately, many doctors refuse to admit when they need help, & so they will spin a good yarn instead.

Not knowing something in the vastly complex & ever-expanding field of medicine is not a failure. Admitting it is also not a failure. Giving a patient false hope, or just wasting their time, is. I would much rather not waste my limited energy chasing after an ineffective therapy, than to be told an inconvenient truth.

Of course, being told nothing can be done is still pretty disheartening. It would be nice if one day someone could tell me that something can be done & was also speaking the truth as they said it. I guess what I’m really saying is that I value honesty over pretending that everything is alright, even where my own health is concerned. Being a know-it-all doctor isn’t reassuring, & many chronic illness sufferers can see straight through the façade after a few months.

All of this being said, there is still something to be said for breaking the truth gently, particularly for those new to the delights of chronic illness. Breaking bad news to patients & their loved ones is an unenviable task. It probably wouldn’t be particularly useful to simply say;

“You’re sick as hell & I can’t fix it. Thank you, next.”

For example, the radiologist said “oh dear” as he did an ultrasound to find my gall bladder impersonating a maraca. This wasn’t particularly reassuring, but fortunately having studied gall bladder disease shortly beforehand, I already knew exactly what I was looking at.

However, the doctor who came to visit me on the ward afterwards perched on the end of the bed & explained to me what gall stones were, what the gall bladder’s function was, & how to kill it. It was something of a revision session for me, so I didn’t tell them that I knew what a laparoscopic cholecystectomy was until after having it explained, much to their amusement. However, the bad news that I would need emergency surgery (my gall bladder was extremely inflamed & potentially could have burst, which I think would look something like the chest-burster from Alien) was broken to me in a perfectly calm & composed manner.

In this situation the doctors knew what to do, which probably made it easier to break the bad news to me.  However, I do wish that when discussing incurable chronic illnesses, doctors wouldn’t dodge around the truth so much, but would tell it as it is in a straight-forward manner. Or maybe I’m just too Yorkshire for my own good.

A Game of Risk.

Very early on in my degree I was introduced to the concept of risk-benefit balance. For example, is using preservatives to reduce food waste worth the potential risk to health? Given that food spoilage & poisoning causes substantially more damage than the rigorously tested preservatives used on food, which have been shown countless times to have minimal, if any, impact on health, it is definitely worth the risk. Quite simply, if the benefit outweighs the risk substantially, it’s probably worth doing. If the risk equals or outweighs the benefit, it won’t be done. Of course, quite how you quantify risks & benefits is somewhat subjective, but there are standardised methods of getting an estimate.

This concept doesn’t just apply to food, but has applications in almost every field, including medicine. My work in clinical trials revolves almost entirely around this concept; we introduce new medicines & therapies to patients, monitor the risks, compare that with their efficacy, & this research is used to direct the future of healthcare. There is also an element of health economics, & the inception-style study of studies & their impact on healthcare, but it always comes down to the risks & benefits.

In people with reduced mobility, using the contraceptive pill could potentially result in deep vein thrombosis, where cholesterol hardened into a sort of scab dislodges from its original place, & becomes wedged in one of the larger blood vessels deep below the skin. It can cause all sorts of issues such as a cerebrovascular events (strokes), myocardial infarctions (heart attacks), or most commonly, pulmonary thrombosis (where the clot obstructs the passage of blood through the lungs, meaning oxygen cannot enter the bloodstream & carbon dioxide is not expelled). Cardiovascular disease is the leading cause of death in many western populations if not globally, so obviously it is something to take very seriously. That’s not even to mention the potential links to breast cancer, something which runs in my family.

I was using the contraceptive pill long before I started having sex; in fact, even once I was having sex it’s primary use was not as a contraceptive. I used it to try & control the irregularity, heaviness, & extreme pain menstruation has caused me since starting a decade ago. Nosebleeds, sickness, acne outbreaks, bloating, intestinal pains, constipation, & headaches plagued me with each period, as did ovulatory pains mid-cycle. At first I was told it was normal. Then it was because of puberty. Then it was because of my other chronic illnesses. Then it was because of painful spasming of the vaginal muscles. Then they finally decided they would quite literally stick a camera in my guts to see what was really wrong. At the time of writing I still don’t know how that goes, or what the outcome is. Hopefully I survive.

My point is, the contraceptive pill helped me manage all of those symptoms, until one day a doctor panicked about the risk of deep vein thrombosis & took it away. The alternatives offered I had previously tried & found to be ineffective, or I simply couldn’t manage such as the coil which is painful in healthy women, let alone this rolling bag of chronic illnesses. Eventually, I was left without an alternative, & I returned straight back to the misery I had been protected from since my early teens. On top of my other illnesses, I could barely stand upright without blacking out.

I fully appreciate the risks deep vein thrombosis present, but I am already sick & in pain. I cannot fathom why the chance that something bad might happen in the future outweighs the benefits I will definitely receive from accessing treatment now. You could argue that a heart attack is far more likely to kill me than what we suspect is endometriosis, but there are also things within my control that I can do to reduce the risk & damage inflicted by a heart attack, unlike whatever this is. I literally have a degree in nutrition & diet is a major contributor; I am trained to handle this exact situation.

The contraceptive pill is just one example of this ridiculous situation, where current symptoms are denied treatment in favour of trying to prevent a future possibility. I have no qualms about doctors informing me of the risks & wanting to avoid them if possible, but no risk can outweigh the benefit of certainty. Certainty that my current symptoms will be manageable. Certainty that I will be able to stand up without passing out. Certainty that I don’t have to spend my days curled up on the bathroom floor, with only a hot water bottle & paracetamol to combat the pains, which feel like someone has put a vice around my guts & is slowly tightening it. Certainty that my quality of life right now will give me a future, whatever that future looks like.

I am not ignoring the risks; I accept the risks. I understand. But surely it should be up to the discretion of the subject that, once all the information has been provided in an accessible way, I get to make up my own mind about how I live? I was happier living with the Sword of Damocles’ dangling over my head than I am feeling like it’s already stabbed me, & if they’re my only options, then I’ve made my choice.

Equal Pay For Disability.

Bold, white capital letters reading Equal Pay For Disability on a purple square. A black & white I.age of several empty wheelchairs surrounds the box in the background.

A Tory candidate has stated that disabled people should be paid less than our able-bodied counterparts, because our work is about happiness.
Because we don’t have bills to pay.
Because someone else will look after us.
Because we don’t pay more for transport, accessible accommodation, equipment, or medication.
Because able-bodied employers are giving us opportunities we should be grateful to receive.
My work saves lives.
It could save the NHS that they destroyed.
It takes skill, hard work, & dedication.
But because I use a wheelchair I should be paid less for it.
This story has already fallen off of the news websites. It’s already being covered up & forgotten. We cannot let that happen so close to a general election.
So if you support disability rights, even if you’re not in the UK, tell people about this. Tell them the truth.
That a vote for the Tories is a vote for blatant illegal ableism.
https://www.bbc.com/news/election-2019-50684582

I Am Not a Drug Addict.

Despite the world’s insistence on kale enemas being the cure-all for everything from colds to cancer, some illnesses require carefully manufactured pharmaceuticals for a cure, & even then sometimes there is no cure & we can only treat the symptoms. There is a plethora of such illnesses, & as of writing I live with at least 3 of them; asthma, depression, & chronic fatigue syndrome/myalgic encephalomyelitis. Depending on the outcome of my impending surgery, I could be adding another to the list – endometriosis (note: I now live with 4, because having just 3 was boring).

All of these illnesses are chronic. For the most part their causes are unknown, making it impossible to cure them. Instead, all we can do is treat the symptoms for as long as they persist, & the word chronic should give you an indication that the symptoms last longer than a couple of weeks. Yet, as fellow sufferers of such conditions will all tell you, we are constantly being reminded by our doctors that the pain killers & symptom managers we rely upon to function are only meant to be used for 6 months, or at most a year.

You don’t need to be a doctor to know that chronic illnesses don’t have the good manners to abruptly stop without warning after 6 months of using a prescribed medicine. However, at this point we start to be pressured by medical professionals to stop using medicines, without alternatives being offered. We are faced with a choice; subject ourselves to debilitating symptoms, or insist on keeping our prescription & be labelled as dependent on drugs. As far as most doctors are concerned, this is no different to being a drug addict, living from one high to the next, consumed by the need to remain intoxicated. Very few of them seem to fathom that our dependency stems from the desire not to be in excruciating pain.

My prescriptions keep me alive; they mean I can breathe. On top of that, they dull the pain enough to allow me to move. They meant I got an education, a full-time job, a husband. They mean I can write blog posts & make videos, join protests & watch wrestling, socialise & play games. Even with them I remain in constant pain.

Back in early 2019, shortly before we were scheduled to leave the EU for the first time, my main prescription disappeared. No one would supply it. I argued with the doctors & pharmacy daily, watching the number of pills left dwindle day by day for an entire month. Eventually, just before I ran out, the supply returned, but for an entire month I had lived in constant fear. If they ran out, how would I work? If I couldn’t work, how would I pay the rent? If I couldn’t pay the rent, where would we live? Even scarier than the financial aspect was the knowledge that I would be in unbearable pain.

In the current unstable political climate of the UK, & who knows what madness will have taken place by the time this post is published, that fear has returned as the supply of my medicine falls into question. It made me realise just how dependent on these prescriptions I had become.

Dependent though I may be, addict I am not. Addiction is an entirely separate physiological & psychological dependency on drugs, often obtained illegally or for recreation in the first place, which still needs to be treated with far more compassion & understanding than it is given now. The stigmas & stereotypes that haunt addiction also haunt me, & that is what I despise. Chronic illnesses & drug addictions are two separate conditions, in need of different treatment options. To lump us all into one category & regard us all as lazy strays draining “the system” of money damages us all.

When all of this is said & done, there is one fact left to face. If we’re being honest, the pressure to get chronic illness patients to stop using prescriptions is to save money for the NHS, not for our own good as they like to tell us. What good is not being addicted to drugs if we’re in unrelenting misery instead, which ironically is something that drives people to use illicit drugs. While the NHS certainly does need more funding, jeopardising the health of patients goes against everything it was set up to do.

So, when you see scare-mongering on the news about people becoming dependent on prescriptions, just remember that there is an entire side of the debate supressed into silence. We are not drug addicts. We are just sick.

She Sells Sanctuary.

Opposition can come from the unlikeliest of places, as I discovered online rather recently. Seemingly out of nowhere someone was telling me at length about how medical research is ableist. They weren’t referring to the general ableism experienced in every industry, but genuinely believed that medical researchers were striving to eradicate disability completely within the next few years. Given that my studies directly related to medical research, & that, well…I work in medical research, this was news to me. However, despite their mostly irrelevant if impressive education & career, they persisted in explaining to me why I, a disability activist, was contributing to ableism.

Needless to say, I was a tad miffed (read: bloody furious).

There were also several fundamental flaws in their argument, & if being married to a philosophy graduate has taught me anything, it’s how to pick apart someone’s argument & use it against them (domestic disputes in our house are fun).

First & foremost, the depiction of medical research on the television makes it seem like cracking the human genome is the key to all medical matters, & therefore once we crack that code, we can click our fingers & snap everyone back into good health. That theory was put to bed over a decade ago, when the infamous human genome project came to a close, & a new field of study opened up; epigenetics.

If your school biology classes were anything like mine, & you were actually paying attention, you were probably taught that there were two categories of things that could influence your biology. These were genetics, & environmental factors.

What if I told you that there is a third influence, which arises when genetics & the environment collide (sometimes quite literally)? Molecules that enter our bodies interact with genes, making them more or less pronounced, activating & deactivating them, & sometimes resulting in a mutation. Suddenly that little dietary balance diagram doesn’t seem so hard.

The truth is, even if medical research could decode the human genome in it’s entirety, it wouldn’t actually solve much. It’s simply not within our grasp, now or any time soon, to eradicate disability. Therefore, this notion that medical research could wipe out an entire demographic is purely fictitious.

But, is medical research trying to do that anyway?

In short, no. We’re too busy dicking around in the office for that.

There is also a troubling implication of the theory that medical research aims to get rid of disability; what about disabled people who want things to improve? Is it ableist of me to not want to be in constant pain? To want to have literally one organ system in my entire body that does its job without periodically trying to kill me? It’s very easy to say that we don’t need to find a cure for disability when the condition you have doesn’t leave you feeling constantly unwell, or at an unsurpassable disadvantage. It’s entirely a different matter when people are living & dying in misery because of it.

Finally, when all is said & done, there is one thing that remains to be said.

In order to find a cure, a disability must first exist. Therefore, medical research is dependent on the existence of illness & disability to stay in business in the first place, you illogical buffoons.

Liberty Denied.

When disabled people ask you not to use the phrase “wheelchair-bound”, it’s not political correctness gone mad; it’s political correctness asking you not to contribute to the harmful stereotypes that still plague disabled people’s lives despite proving them wrong time & time again.

The term bound has a lot of implications. It implies that no wheelchair-user, the phrase we would like you to use please, can stand or walk at all. This then contributes to the accusations of faking a disability for benefits, because as we all know that is by far the most effective way of paying the bills. It also contributes to the notion that sudden, inexplicable miracles are a lot more common than you would reasonably believe.

Bound is a word that also implies a lack of freedom, that someone is imprisoned by a wheelchair, which is not true. This in turn causes a lot of physical & mental harm to individuals who become disabled.

When it was recommended that I would need a wheelchair eight years ago, I was adamant that I would only use it for very long trips. I stubbornly refused to use it at after school events & on shopping trips, for fear that I would become disabled. The truth was that I was already disabled. A wheelchair doesn’t disable you; dysfunctional body parts do, & you just might end up using a wheelchair should such a malfunction occur.

My stubbornness left me in horrendous pain & with unbearable fatigue. Then, thanks to Graded Exercise Therapy, my health plummeted & I was left with no choice but to use the wheelchair every time I left the house.

As I expected my life was transformed, but to my surprise it was changed for the better. Suddenly I had my life back. I had an education & friends & as the years passed, I would make my way to university, employment, & marriage. None of it would have been possible without my wheelchair.

There is a stigma that becoming more dependent on mobility aids is “giving in” to disability. This is not true, unless of course you count “giving in” as learning to face an inherently ableist society where your basic human rights are constantly overlooked or denied completely. This stigma makes people believe that mobility aids are a worst-case scenario, that using them is to show weakness, & that their lives will become worse if they use them.

Many of us seem to have that awkward relative who, despite being increasingly aware of their age (to put it politely), refuses to accept help or mobility aids. How many bones have been broken because of this? How many people have been trapped in their own homes because of this? How many people lose their friends because of this? The fact of the matter is that not using a mobility aid is far more likely to imprison & harm someone than using one is.

When writing this I must admit I did have one particular person in mind, although from discussions on social media I know that this is a very common problem. I don’t know if that person will read this, & if they do I may well end up in trouble for suggesting such heinous things, as it is a difficult topic to discuss. By using more inclusive terminology that better reflects the experience of using a wheelchair or other mobility aid, perhaps we can learn to have this difficult discussion, & improve the lives of millions of people across the globe.