Doctor Google.

As a nutritionist working in medical research, one of the banes of my existence is Dr Google. “I read an article that said-”, “But I found on the internet that-”, “I saw a video that suggested-”…

In this day & age it goes without saying that you cannot trust everything you read online (except for this blog, obviously), & that the advice of experts is even more valuable among this information overload. So, when I hear medical professionals bad-mouthing those who turn to the internet & self-diagnose, on many levels I agree with them.

However, perhaps we are too quick to judge the people who do this.

While I had an unusually quick diagnosis of Myalgic Encephalomyelitis (& that is not to say that the process is quick or easy even in these cases), I would go on to face other struggles. When I started showing symptoms of depression, complete emotional breakdowns, self-harm, & even a suicide attempt amongst them, I was refused a diagnosis of depression. It was just low mood. I was doing it for attention. Worst of all, these were symptoms of ME, a disease that was clearly all in my head. Apparently, a diagnosis would cause me to express more symptoms via some kind of placebo effect, but without a diagnosis I couldn’t access proper treatment. It was left to spiral further & further out of control until finally I was granted access to medication; medication I still use to this day.

A few years later I was experiencing sickness to the point where I couldn’t even keep water down, & was getting pains so furious it made it hard to breathe. I was given a diagnosis of gastroenteritis, even when the doctor admitted that the symptoms didn’t match this diagnosis, & I was sent on my way. Of course, the problems continued, & it took a junior doctor who hadn’t yet been trained to view all patients as stupid to do extra blood tests, which showed abnormal results. As I went for an ultrasound scan the nurse waxed lyrical about how I didn’t have gall stones, despite the symptoms & the blood test results pointing to exactly that. Surprise or the century; I had gall stones.

When they accidentally left a gall stone behind after removing my gall bladder because they decided not to perform a simple test, I returned with the same symptoms. I was disbelieved on all levels, & a doctor who never met me had my saline drip removed as he was adamant I should just drink more water. Drink more I did, but it only meant I vomited more back up. I was accused of being a fake and almost forced out of hospital still suffering symptoms which I was apparently making up, before finally a radiologist found the problem. A gall stone had been left behind, which I had been telling them was so for almost a week.

Currently I’m trying to get another diagnosis for something I’ve been dealing with for almost 11 years. It runs in the family & not only do I express the symptoms, but I’ve followed the exact developmental patterns it caused in my mother. GP after GP after GP refused to believe me, telling me it was just puberty, even at the age of 22. I finally got a hospital referral where the doctor believes it to be a psychological problem, & they “forgot” to give me another appointment until almost a year later I had had enough. I am still waiting for them to even do the diagnostic test.

We know our bodies best. We know how they normally feel & how they shouldn’t feel. We know when we’ve had enough. I have immense respect for the medical professional but when patients are sent away without answers, support, or even the hope of support in the future, of course they turn to the internet for help. People used to turn to witches or priests in exactly the same capacity.

I will follow the advice of a medical professional, but that presumes that I am given advice to begin with.

The Rejects: 6 Assumptions About Nutrition That Are Utter Bull.

Food and nutrition pops up in our news feeds every day, with someone claiming that eating carrots will make the sun shine out of our backsides, or that broccoli will obliterate all illness from the face of the Earth. There are several assumptions and clichés associated with the subject, leaving qualified nutritionists and dieticians rocking back and forth in the corner of a padded cell. As a recently qualified nutritionist who hasn’t been assigned a padded cell yet, I’m going to rant about these assumptions and hope that someone takes notice of me.

Nutrition isn’t a valid subject.

If I had a lollipop for every time someone said “oh that’s just eating your greens, right?” I’d be diabetic by now. Trust me, after (perhaps stupidly) spending 3 years and £27,000 to study the various ways of becoming diabetic, I would know. Taking a week long online course can give someone a basic overview of nutrition, but it’s a little insulting when that online course is equated with a degree, especially when that degree covers everything from food safety and legal requirements to physical chemistry and biochemistry. That isn’t even comedic hyperbole; it’s the truth.

Sports nutrition is the same thing as nutrition nutrition.

Before all the sports nutritionists start foaming at the mouth like one of their beloved protein shakes, I am not saying that sports nutrition is an invalid subject. It’s just a different subject.

While I would be able to give an athlete general advice on how much protein to eat from which foods, I wouldn’t be able to give specific advice where sport is concerned. This is primarily because my capacity for sports is summed up by my inability to throw a piece of paper in the bin that is less than a metre away from me, but also because I studied gross diseases that make for perfect dinner conversation. Where a sports nutritionist can give general advice about eating healthily, they might not be as clear on individual variations and needs such as diseases.

Supplements are the best thing since someone realised they could make money from them.

I don’t know how many times qualified medical professionals have to say this, but over-the-counter supplements are a waste of money. You excrete excess nutrients in your urine if you even manage to absorb them, so essentially you’ve created the planets most expensive piss. If you don’t absorb the nutrients, they’ll take an alternative route into the toilet. Many scientific papers also note that multivitamins only improve nutrient levels in the body when a relatively healthy diet is already in place, meaning that the supplements can’t be used as a fruit-and-veg replacement.

If that isn’t enough of an incentive to stop, how about the various means by which multivitamins can cause physiological damage when overused? Their overuse may even be a risk factor for obesity.

When supplements are prescribed by a doctor, they help to treat a deficiency in a particular nutrient, and are essential for recovery. Otherwise, in all honesty, save your money.

Anyway, if you wonder why the models and actresses on TV adverts for these supplements always look so glamourous and happy, I think you’ll find that make-up, Photoshop, and a big pay check have a lot to account for.

Weight Loss is Easy.

Aside from amputating a leg, there is no way to shift loads of weight instantly, and I’m not an advocate of unnecessary limb removal.

Starving yourself for rapid weight loss can result in all sorts of unpleasantness, such as bad breath and the inability to take a dump. Oh, and death. It can be down-right hazardous to health, which is the very opposite of what you’re trying to achieve by losing weight.

Think about it this way; if Weight Watchers actually worked, they’d go out of business. Their yogurts are great though. Seriously, they’re good.

Nutritionists are judging you.

In just about every scientific paper where dietary habits have been recorded, it is recognised that what is recorded may not be what was actually eaten. There are lots of reasons for this; short of weighing something it’s difficult to get accurate portion sizes, it’s easy to forget drinks and snacks consumed between mealtimes, and quite frankly, people lie.

When asked to record what they’ve eaten, people will often say they have eaten less of the typically unhealthy foods, and more of the typically healthy foods, than what they actually ate. They do this because they think a nutritionist would look at their actual diet and heartlessly berate them until they started crying. In reality, the more accurate information the nutritionist receives, the more they’ll be able to provide help. Everyone makes mistakes or bad choices concerning food at some point, partly because there are so many social, commercial, and biological factors controlling food intake that it is impossible to control them all.

Nutritionists aren’t judges; they’re food-doctors.

Nutritionists eat nothing but raw broccoli.

Having dedicated three years of my life to studying food, I think the conclusion that I really like food is plausible. In particular, I like cake.

Somewhat strangely, people always manage to catch me sinking my teeth into a big, sugary, creamy, diabetes-inducing slice of chocolate gateau, and then call me a hypocrite (or sometimes just a hippo). I get told I shouldn’t eat it because I’m a nutritionist. Clearly they have failed to realise that nutritionists are actually human beings with the same nutritional needs as everybody else, and therefore are also capable of eating cake without dying immediately in response to inorganic glucose touching our delicate lips.

What they also don’t realise is that I am actually making a great sacrifice for humanity by eating cake. In doing so I am reducing the availability of cake for everyone else, removing temptation from their path. It truly is a great sacrifice to make for the benefit of society and has absolutely nothing to do with the affinity of my taste buds to cake.

Nutrition is a nerdy subject for nerds who like to eat, and I honestly can’t think of a better example of leaving it to the experts. Actually, nuclear physics springs to mind. Yeah, definitely don’t want amateurs playing with nuclear equipment; we all know what happened the last time someone did that…

The Corridor.

When you start a new job there’s a lot to think about; being in the right place at the right time, sorting out the paperwork, & introducing yourself to the total strangers you’ll spend 35 hours a week with. If you are disabled then there’s even more to think about. Unsurprisingly one of the things that concerns disabled employees most is accessibility.

I’m lucky to have an employer who took great care to ensure that I had all of the tools I would need to do my job. In fact, the only part I cannot do independently has nothing to do with my disability, & has everything to do with the fact that even when balanced precariously on a stool, I’m too short to reach the top shelf of the 2 metre tall cabinets.

In fact, the biggest obstacle to overcome didn’t occur in the office at all, but in getting to & from my work.

The building I work in is huge. It has 8 floors, not counting the secret underground laboratory where we’re teaching rabbits to wear flat caps & talk with a Yorkshire accent. Despite spending many hours in there as a student, & now working there, I get lost looking for anything beyond the rooms we commonly use, & the café which is nowhere near the rooms we use, but I just so happen to know where it is anyway. Oh, & then there’s the great big hospital we’re attached to.

There are 3 reasonably-sized lifts available to everyone who uses the building. Most people were more than accommodating when it came to lift access, but it only took a few arrogant tossers for me to spend 5 minutes waiting for the lift to come back around only to find it full again. I left enough time to account for this, but even then, I could be late into the office.

I raised this as an issue & much to my surprise, instead of being called a whinger I was granted access to a fourth lift that only people with a key could get to. You had to have the key to enter the corridor, & then had to use it again to operate the lift. It basically guaranteed me a spot in the lift whenever I wanted.

The problems arose because the cleaning staff, who were based along this new route, were not accustomed to wheelchair users. The corridor was frequently blocked. I asked politely to keep a route clear but was told it couldn’t be helped, so I told them that they would move it or there would be trouble. Naturally there was trouble, when I shared this photograph with the building manager:

The lift blocked by crates, boxes, trolleys, & all manner of cleaning equipment.

In all fairness to the team, it’s not happened since. Although, as it transpired, I had won the battle but not the war.

Next came the cleaner who, with good intentions, asked if I needed help getting through the double doors. I politely declined but was ignored, & the door was wrenched from my grasp resulting in a minor shoulder injury. Some might say I should just accept the help, but I despise the notion that I am not human enough to know my own capabilities or that my words are just hot air.

Even after this, my biggest obstacle was yet to come.

It was a Friday night & I was leaving the office. I entered the lift alone, my key dangling around my neck on a lanyard, which I used to select Floor 4 (which is one of the ground floor entrances alongside the other on floor 7. As I said, it’s a weird building and it’s also on a steep hill). The lift stopped at floor 5 and a porter pushed a large trolley into the lift.

“Where are you going?” he asked as if he couldn’t see the number 4 glowing.

“Floor 4,” I returned.

“No, you’re not,” he smirked.

“Um…yes, I am,” I responded sharply.

“There’s no way out there.”

“Yes, there is.”

“But you need a key.”

“You mean like the one dangling around my neck that you need to be able to operate the lift we’re in?”

Apparently, he was only being nice. He only asked a question because he had assumed that I didn’t know where I was going in the building on the route I used twice daily, 5 days a week. This fails to address why, once I’d told him where I was going (as if that was any of his business in the first place), he persisted to ignore my responses and undermine me with blunt statements.

Encountering this attitude once was bad enough, but it happened a second time, & a third time, & then a fourth. Before long I’d lost count. Despite the plethora of evidence which included my key, my staff badge, & buttons already pressed in the lift, I was frequently told that I didn’t know what I was doing & I shouldn’t be there.

My employers are doing all they can to stop this. All staff undergo extensive Equality & Inclusion training, & there are working groups & committees in place, several of which I am a member of. Signs have gone up by the lift alerting people that wheelchair users can use this route, asking others to be considerate. None of it has worked.

I do not blame this on my employer, nor is it a reflection of their attitude. It is instead a reflection of the general attitude towards disability displayed by the populace. It is the culmination of the stereotype that we are helpless individuals worthy only of pity. It stems from the hatred we face for relying on government funding that allows us to access the equipment we need to be able to work. Even if it is subconscious, in just one short corridor, I have encountered more ableism than I ever will in my actual job.

There is, however, one small thing that they have not accounted for; tyre tracks on their shoes will be the least of their worries if they get in my way.

The Rejects: 6 Things People With Chronic Fatigue Syndrome Want You to Know (But Are Too Exhausted to Tell You).

At one time the UK parliament took a break from arguing about how we could slip discreetly from the EU like an introvert leaving a party at 9 pm, and instead argued about a disease called Chronic Fatigue Syndrome (CFS). This illness is also known as Myalgic Encephalomyelitis, a slightly more imaginative if unpronounceable name. This being the 21st century, where everyone’s opinion can be shouted in cap locks across the internet regardless of experience or expertise, social media was flooded with posts discussing the illness. Of course, not many people remembered to ask the sufferers of CFS, because that’s too obvious or mainstream or something.

At 14 years old a virus decided that my brain was the perfect vacation spot, and through a series of unfortunate events that even Lemony Snicket would have trouble imagining, I developed Chronic Fatigue Syndrome. It’s time for someone with experience to have their say, albeit with naps between each paragraph.

  1. CFS is Real.

I have lost count of the times I have faced accusations of faking my own illness to play truant from school or work, to gain access to prescription drugs, to get disability payments from the government, or simply for attention. I have also lost count of the number of times I have been told that the disease is fake, or purely imagined by all those said to have the disease, despite an ever-growing body of evidence suggesting otherwise. Why listen to scientists, though? It’s not like they’re experts or anything.

Social services even became involved when an anonymous accusation was alleged against my parents suggesting that they were making me use a wheelchair unnecessarily to obtain extra benefits. Fortunately, social services neither had the time nor the resources to look into such a petty and under-evidenced claim, but the experience was perturbing all-the-same. This had a large, soul-destroying impact on a teenager in the midst of puberty. My poor parents.

  1. It’s More Than Just Needing a Nap.

CFS, aside from being the most unimaginative name ever, does give the impression that sufferers of the condition get a bit tired and need to follow the sleeping schedule of a cat. Yes, I get really, really tired, really, really easily. As in, sat-up-and-opened-my-laptop easily. However, there is also the joint and muscle pain, headaches, dizziness, nausea, sickness, muscle weakness, cramps (holding a pen is a fun way to induce hellish cramps, which won’t have any effect on my writing career at all), irregular appetite, sleep disturbance (ironic), itchy skin and eyes, muscle tics, passing out, short term memory loss, and poor concentration to contend with. What was I saying?

To summarise, it is a debilitating condition forcing many sufferers like myself to use walking sticks and wheelchairs, and in some rare cases can even prove fatal.

So, to encompass the nature of CFS in a name, (and what, after all, is in a name), it would have to be called Chronic Fatigue, Pain, Dizziness, Nausea, No Sleep, Brain Fog Syndrome, which is a lot less catchy, and a lot more tiring to write.

  1. Yes, I Do Need Those Pills.

If you have managed to stomach any recent news reports, you might have encountered news of an “opioid epidemic” sweeping America. One of the main talking points is whether people with chronic pain such as fibromyalgia, arthritis, and CFS should have access to these drugs. While I personally have had very limited experience using opioids (but the few times I have, man I felt good), I have at least been able to access alternatives that might not be affordable were they not on the NHS. It should also be noted that some of prescriptions I use are to manage the side effects of other prescriptions, in what I like to call “pres-ception”. It once got so bad that the shelf in the medicine cabinet collapsed, I kid you not. One of my favourite jokes is to claim that I am a human maraca because of the number of pills I take on a daily basis. What that actually turned out to be was gall stones, but that’s another story for another day.

Here’s the thing; on occasion I am unable to take these medicines as most of them require ingesting with food to prevent stomach ulcers. If I can’t eat, or throw up everything I eat, I can’t get the medicines down me. When I haven’t been able to take my medication, I notice it pretty quickly. On these days sitting upright, even propped up by pillows, is exhausting. Even going to the bathroom is practically impossible, which has led to one or two awkward scenarios.

  1. No, I Don’t Just Need to Exercise More.

Here’s the thing; I was prescribed “exercise more but with medical jargon” by my physiotherapist. Being the naïve teenager I was, thinking that the medical professionals would know how to treat my illness, I followed her instructions to the letter. It worked so well that I went from being able to walk around outside with only the need to take occasional breaks, to having to use a wheelchair when I want to travel more than a few metres.

Nor am I alone in this, as multiple studies have found that these exercise programmes tend to make things worse, not better.

  1. It Varies From Person to Person.

CFS would be a lot easier to study and treat if it didn’t vary like the British summertime climate. Some people just need to take breaks or naps every so often, and some people can’t sit upright unsupported. I’m somewhere in the middle, using a powered wheelchair but able to work, and I can hobble around the flat leaning on walls, furniture, and my husband.

I am often compared to others who have had CFS, and people will even try to shame me by saying that “X” was far more active than me when they had CFS, or that “Z” had it far worse and I don’t know how lucky I am. The reality of the matter is that the wide variability of the disease means that knowing one person with the illness does not give you enough experience to make judgement calls on others.

  1. We Hate the Fakers as Much as You Do.

The debate as to the existence of CFS can be largely attributed to the fact that, as yet, there is no medical test available that can distinguish who has and hasn’t got the illness. There are no biomarkers that can provide distinct answers. This means that people are able to fake it, knowing full well that their lie can’t be undermined by pesky scientists. It raises questions as to how to tell the fakers and real patients apart.

The fakers (I like to replace the A with UC) give the rest of us a bad reputation, and have made the lives of those of us suffering from the condition significantly harder than they already are. So, if you think the fakers piss you off, imagine being in our shoes (or wheels).