I’m a passionate advocate for science-based medicine, long-term care for long-term conditions, and encouraging those of us with chronic (and often incurable illnesses) to learn how to stay safe online.
I know how easy it is to fall into traps that can be both mentally and physically harmful.
A few years ago, I was at my lowest point. I’d added PoTS, Histamine Intolerance (suspected MCAD) and Chronic Fatigue to my already shitty EDS experience, and I was so unwell I thought (and wished) that I would die.
After exhausting all the medical options, as I was, unfortunately, that rare person who reacted terribly to the ‘miracle’ meds, I dove headfirst into a deep, torrid affair with Doctor Google, and I fell hard for the promises of wellness.
Never-ending propaganda promised me that if I just changed my diet, I’d ‘cure’ myself, just like the glossy girls on my Instagram feed gushed that they had. Some of them even, apparently, cured themselves of some of the same conditions I have.
At the beginning, I started to get a bit better. All I did every day was read about food, talk about food, and prepare food. My house reeked of juiced broccoli (sorry, mum!) and my entire purpose in life was to cure myself with food.
I can laugh about it now, but it’s actually really sad. I genuinely believed that the food I was eating had the ability to poison me, and I was absolutely terrified of making myself more unwell than I already was.
A lot of us turn to diet “cures” out of desperation. After all, it’s bloody hard to admit that you may never get better, and for me, food felt like a ‘what’s the harm’ kinda thing that I could use to try and feel in control of a situation that was spinning out of control.
Testimonials are enticing (especially before you learn that there’s no evidential value there), and obsessive reading, Instagramming, and Netflix documentaries had ingrained the message in my brain that the food we eat has insane power over our health, and every bite we take is a choice to ‘feed your sickness’ or to ‘return your body to its natural state of health’.
I ended up believing that any fluctuation in my health, my chronic, incurable, fluctuating health) was my own fault.
I know now that it’s pseudo-religious bollocks, but it’s easy to believe when you’ll grasp onto anything to be better, and people will actively message you on social if you eat something that they deem is making you worse (yes, that was a fun time).
As humans are wont to do, I failed to make the connection between my decrease in symptoms and coming off of meds that made me want to die. I didn’t associate it with the natural fluctuation of these conditions, and a myriad of other things that I won’t go into here. As I continued, at first buoyed by my success, the subsequent flare ups over the next few years confused me, and made me feel like I was failing.
The glossy girls did this and they were cured. Why wasn’t I?
The worst part was, since I was sharing my “journey” on Instagram, people also felt like they had a right to comment on the strengths and weaknesses of my current diet, as well the supposed negative attitude that was standing in my way of a cure.
I was always doing something wrong. I wasn’t pure enough. I wasn’t extreme enough. The thing standing in my way was the fact that I didn’t believe I could get better.
Was I supposed to be following their advice?
I was never much into science, but I consider myself an intelligent, critical thinking person. I fell for diet-woo because I was desperate. At the time, I was literally intolerant to most things, so along with wanting to be better, I genuinely couldn’t eat more than a few foods, so it seemed like a sensible track to go down.
And this is where quacks prosper.
These messages are propagated in a way that is so enticing – and it’s important that we keep this in mind when we try to tackle it. We need to make sure that we are always looking for proper evidence from qualified professionals, and not getting advice from random people on the internet – be that about diet, coming off meds, or alternative ‘treatments’ we should try.
But as a sick person, I know how hard these messages are to avoid.
They come from people ‘innocently sharing their journey’, people commenting and wanting to help because it supposedly helped them, and these ‘cures’ are usually pretty high up on Google when you’re looking for support. It takes a lot of strength to avoid them.
Look, I know it’s difficult, and unfortunately, for many of us, the research just isn’t there yet for many of our conditions, and we’re going to want to look elsewhere. But the way most of these messages are packaged online is just so simplistic. And if we’re honest, if anyone is ‘cured’ in a week from their illness by going on a Vegan diet or changing their mindset, it should raise red flags.
Please learn to stay safe and educate yourself. We have a lot to deal with when it comes to our health, and it’s important that we’re always getting the best information. Go and see licensed experts, recommended by your specialists if possible.
I gave a talk about this to the British Dietetic Association’s Eat Fact Not Fiction event last month, which you can watch here: https://www.youtube.com/watch?v=cMj8E2_ZyAk&index=5&list=PL8uTnQbZOE3a2x5KKxzOekKSnq3b8ti6a
And below you can find some of my favourite resources that helped me learn more about evidence-based medicine and nutrition, and have taught me so much about staying safe online and in an environment that seeks to take advantage of my desperation.
Bad Science by Ben Goldacre (book)
Interestingly, this process has helped me accept my conditions more. Not in a ‘giving up’ kinda way, but I’ve recognised that I can’t constantly fight my body, and have to find ways to learn to truly live.