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.

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.

Bad Medicine.

Back in April the internet was blessed with this little anecdote about a woman who has suffered from migraines since her teenage years. Experience taught her to react to the signs of an oncoming migraine & take her prescribed painkillers before it fully took hold, & providing she did this, she didn’t suffer the symptoms any more. Her boyfriend, having never seen one of these migraines as she always nipped them in the bud, decided that she no longer suffered from migraines. He got it into his head that she had some kind of psychological dependence on her drugs.

One night, when staying over at his place, she felt a migraine coming on. She went for her painkillers but couldn’t find them, so crawled to bed in a vague attempt to sleep it off. It wasn’t until several hours had passed that her boyfriend admitted he’d taken her medication to prove that she no longer had migraines, & only returned it to her after having seen her struggle for several hours. He was, apparently, remorseful.

Words cannot sum up how angry I was after reading this post. I was appalled. Disgusted. Enraged.

Those of us who suffer from invisible chronic illnesses such as migraines, fibromyalgia, or ME, or mental illnesses like depression & anxiety, are constantly being told that we don’t need the medicines prescribed to us by a doctor. In fact, many of us have great difficulty accessing the medication in the first place, so the thought of it being swiped away by some know-it-all with a homeopathic kale enema is beyond terrifying.

Even if it transpired that we didn’t need the medication, removing it completely without warning is straight-up dangerous. Many medicines require a weaning-off period where the dose is gradually reduced. For conditions like asthma & allergies, removal of the medication could easily result in death.

Even those who work in the medical profession themselves seem not to understand the need to nip symptoms in the bud before they escalate. When staying in hospital multiple nurses seemingly objected to the volume of pills I was taking. One temporary prescription I had been given the week before was even removed without my knowledge, let alone consent, & once the pain had escalated beyond control the doctor refused to come to the ward or give me anything to help, claiming without having seen me that I was faking it.

If even inside a hospital, our access to effective medication cannot be depended upon, it is no wonder so many of us guard our medicines so fiercely. They are often kept under lock & key, & it is rare that we let anyone but those who we trust most anywhere near them.

Had Jarred ever tried to wean me off the medication on the pre-tense that I don’t need it, & all I really need is spinach & happy vibes, the relationship would have been destroyed right there & then. Every day I trust him not to meddle with my medication, & after reading this anecdote I realised that I take his reliability for granted.

Unless you are a doctor with knowledge of the patient’s medical history, illness, & prescriptions, you are in no position to make these decisions. Even then you need to listen to the patient, and properly address any concerns they have. No one knows a patient’s illness better than the patient themselves, yet often our needs go ignored.

Think. You wouldn’t take away an ex-smoker’s nicotine patches because you’d never seen them smoke, & you wouldn’t take away a cancer patient’s chemotherapy because it’s essentially a deadly concoction of poisons & therefore you believe it won’t do any good. If you want someone with a chronic illness to trust you, you must prove that you can be trusted.