When I first started my Instagram account it was a way for me to keep track of the drastic changes my illnesses had desperately forced me to make to my diet. I had already been blogging about my experiences with EDS and my new diagnoses, but this was to be a new foray into an almost constantly updated daily diary. I quickly found that it was a way to connect with people, get inspired and learn from others who were experiencing similar things. After all, being chronically ill in your teens and twenties when you’re supposed to be out starting a life can be soul crushingly miserable, boring, and isolating.
After spending months reading books, blogs and articles online, I started snapping close ups of quinoa salads, juiced my first ever green concoction (it did take some getting used to) and made smoothies in my tiny food processor with the first almond milk I could find at the supermarket. I was a wellness noob. But talking to other people on the #EDS #POTS #spoonie hashtags and starting to explore the #vegan #plantbased #healthy accounts provided me with motivation and support to continue researching the potential benefits that changing my diet could have on my heath.
At this point, my digestive system simply didn’t want to work. I hadn’t been able to eat for months without being in excruciating pain, I’d been suffering severe allergic reactions to everything, my blood pressure would bottom out when I tried to move, I could barely function, and all of this was on top of the chronic pain and almost daily subluxations and dislocations that I had been experiencing most of my life with Ehlers-Danlos Syndrome. Like I didn’t have enough to bloody deal with!
Mountains of different medications, anti-depressants, and psychotherapy didn’t seem to help. My body was rejecting the drugs, the anti-depressants made me psychotic (although the psychotic reaction after the second attempt at trying an SSRI while as an in-patient actually snapped me out of the deep-darks of my depression at the time, so that’s something right?!), and I was desperate. I’d stopped working on my own projects and just couldn’t do anything except be in bed staring blankly at my laptop. I felt like my body was failing, which was causing my mind to turn to mush, and as a highly motivated and ambitious person, this meant that, essentially, my life was over.
I started figuring out that I often got the most irritatingly rare and frustrating side effects from medication. Even when I would ask a doctor to list everything that could possibly happen, I’d rock up a few days or weeks later feeling a million times worse with side effects they hadn’t told me about because “no one really gets them”. At one point I think I was seeing six different professors, a therapist, my GP, a psychiatrist and I was just getting more and more unwell. I hate feeling powerless, so I decided to try and make some changes to see if I could, in a small way, make a difference to how I was feeling. After all, I thought, it couldn’t hurt.
And so my relationship with Instagram began. At the time I was also trying to convince myself that changing my diet was something that I wanted to do. Yes, of course, I wanted to try and find things that would help me feel better, but as a massive foodie and someone who always turned to food when I was the most unwell, suddenly seeing myself as a gluten-free, refined sugar free, green juice addicted vegan felt absolutely absurd. As a result, I announced to my family and friends that I needed to brainwash myself into believing this stuff to make it easier for me to deal with. I’m quite stubborn, so I can’t just convince myself of something when I’m a bit iffy. I need to believe, yo.
And up to a point it worked.
Of course, when you first make such dramatic changes, you’re bound to struggle, especially when you change a lifetime of eating habits overnight. I had to slowly introduce high nutrient and anti-inflammatory foods that wouldn’t send my histamine issues through the roof, while making sure not to set off my digestive problems. The only energy that I had was spent on experimenting and preparing food. My newly purchased juicer was in almost constant use, and the sound of machines constantly whirring mixed with smell of broccoli pulp drove my parents mad.
I started volunteering for a charity, and I remember that after half an hour in the group induction, I was in the loo crying because I was too ill to do anything. But I needed to, for my mind, feel like I was doing something that wasn’t just staying in bed. How awful it all made me feel made me more determined that I needed to do something to help myself.
I watched every documentary about health and wellness I could find online, read as many books about veganism and healing foods as I could get my hands on. I spent hours every day copying recipes that I could adapt to my weird and random allergies to try out. I still have hundreds stored on my computer that I haven’t looked at since.
I became obsessed.
And the scary thing is, for a while this obsession helped me so much.
I became fixated on the idea that I could feel better (probably never cured, but better) if I ate the way that I saw the glowingly happy and healthy people on Instagram and Youtube and in my books ate. Dairy was the devil. Gluten was poison. I just didn’t need meat.
I remember a point feeling so weak that my mum took me out for a piece of grilled chicken and her remarking just how much colour I suddenly got in my cheeks. Funnily enough, my friend said the same thing to me the other day when I had a piece of steak for lunch.
But I kind of ignored that at the time, because after a few months, I started to feel a difference. I had been slowly introducing high nutrient foods that were higher in histamine into my diet on a long rotation, and after some time I stopped reacting to them. Being able to tolerate some avocado without my throat closing up was extremely exciting. I was able to start eating small meals with the help of having green juice beforehand. I was able to start trying more and more food and experimenting so much more. I wasn’t rolling around on the sofa in pain after half a banana, and I could actually go out at least once a week for a few hours. While it wasn’t much, I was starting to feel so much more like a human being again. It felt like a miracle. Suddenly my body was becoming sensitive to what I put in it; I was becoming in touch with my cravings, what I felt like I needed, and I could sense the reactions I was having to everything I was eating.
At the same time I switched out all my ‘traditional’ beauty products. While I was never a big wearer of makeup, I was a fan of luxury face creams, and wouldn’t go out without a dash of Chanel lipstick. I spent months just using water before my system felt calm enough to start trying natural products. We had to switch all the cleaning stuff in the house too…even now the smell of ‘normal’ cleaning spray makes my skin start burning. I’m staying with my parents at the moment, and my mum told me I need to go to my flat for a few hours so she can clean! I genuinely believe that cutting out a lot of the chemicals that can be found in traditional beauty products (that’s everything from soap and toothpaste to deodorant and mascara) to ones made from only the most natural ingredients, played a huge role in getting my histamine issues under control, and it’s something that I will continue to do because I immediately can feel the difference when I “cheat”.
During this time, I continued to share my daily experiences on Instagram and interact with people from all over the world. I honestly never thought I’d get many followers, so the first milestones of 50, then 100 were pleasant and exciting surprises.
I then started to get really “into” Instagram. Instead of just snapping ugly dishes, I tried to experiment and make my food pretty – something I’d never done before. I started following accounts that just posted pretty food for inspiration. I wanted to get more followers, so more people who felt alone could hear about my experiences, and feel that there may be another way.
Posting on Instagram proved to be an extremely cathartic and healing experience, especially as I started to be more creative with the pictures that I took. I felt that there was a huge amount of support out there, which meant a lot (especially on bad days), but even from the beginning there was something simmering underneath the surface that made me feel uncomfortable.
Undoubtedly, when it comes to health, it’s easy to deep-dive into obsessive patterns when you’re trying to find something that will help you. Even in the early days of posting, people would judge what I chose to eat and offer unsolicited advice of foods, diets, supplements, exercise routines, and even diagnoses based on the small amount of information that I was choosing to share.
As I started getting some more followers, and people started wanting to interview me or write about the path that I was taking, I always tried to make it clear that I was constantly experimenting, and what I was doing was working for me at that time. I wasn’t specifically recommending this to anyone else. Medication had made me feel worse, so I didn’t take it. From the age of about 16 I realised that painkillers didn’t do anything for me, so I didn’t take them. The only medication I stayed on for a while after I started Instagramming was midodrine to help me with my blood pressure. While the side effects (three times a day) made life uncomfortable, I just wasn’t well enough to give it up right away.
A lot of people seemed to be fixated on the drug-free, food as medicine “cure”. While I understand why this was, especially in the way I may have sometimes presented what I was doing, it was never my intention to tell anyone that what I was doing was in an attempt to cure myself. It was, and still is, my attempt at finding ways to manage what is wrong with me. If I can manage my symptoms as much as possible, and I don’t do things that will cause me to be in more pain and more unwell, that’s good enough for me. I never said that people should stop taking medication if it works for them, that doctors are evil, and that food is the only way forward. It was just, unfortunately, that meds at the time didn’t help me and I needed to find things that did. Even if it was only a little bit. Unfortunately, when people try to write about those of us who are trying to manage complicated conditions in “non-traditional” ways, especially for large publications, things often get sanitised for the mass-market and trivialised in ways that are easy for most people to consume, but often frustrate people with illnesses. I do recall some people with my conditions criticising me and others for saying that diet has helped with some symptoms because it almost makes it seem like the conditions are something we have control over, which, in some way, diminishes their suffering. This was never the case, and again, I never believed I can cure something that is structural in my body (this all comes down to my funky collagen), but it’s undeniable that to an extent, I can find some things that help sometimes.
So, I was, say, six months into Instagramming, and I was off my meds, I was eating a lot of really healthy delicious food every day, I’d made some amazing friends, had a job, worked out, started some really cool projects and was amazed at how much better I was feeling compared to just one year beforehand. I felt like things were under control.
And then they weren’t. My body just suddenly stopped working.
I think one of the things about trying to use food and lifestyle changes as a way of healing and looking after yourself is the mental shift. You feel so unbelievably out of control when you can’t walk for more than a few steps without your knee coming out, or you don’t know whether you’re going to be able to function when you wake up in the morning. So by making a conscious decision to focus on diet, I felt like I was finally in control of something in my body, even though I was definitely heading towards a serious problem with orthorexia at the time.
Despite the fact that I was doing everything right (or so I thought), my body still stopped working. I got so down in the dumps and miserable and confused. What was I doing wrong? Why had eating this way worked for all these people I followed and admired and my body just hit a brick wall, stuck out its tongue and yelled “nope” at the top of its lungs?
Well, duh, that’s the nature of chronic illness.
It was only then that a lot of the nagging things that had been bothering me about Instagram and the wellness scene started to bother me even more. Because I was suddenly not in this artificially shiny space of perfect bodies limbering up in Lululemon while sipping a “detox smoothie”. Not that I ever truly was, but I’d been hit with the harsh reality that no matter what I did, I can’t always out-run (or out-juice) my body.
One thing that I have always tried to do is be honest about my symptoms and experiences with what is happening to my body, both the good and the bad. And for a while, there was definitely a lot of good. I was seeing some great improvements and feeling significantly better than I had in years. When I started writing about my struggles, I started to get a lot of comments that made me uncomfortable.
I think it’s really important to highlight that while changing your diet and lifestyle are really key in managing health problems, they are not a guaranteed fix. And of course, no matter what, going from the pretty standard Western diet to one that focuses primarily on fruits, veggies an whole grains is going to make most people feel better for a while. I’m sure there are many people who are now thriving in the long term from making changes, but unfortunately, it doesn’t work out for everyone. However, the way a lot of things in the wellness industry are portrayed, especially on social media (but it’s infiltrating the mainstream press too) I believe can be quite dangerous to the average person just looking to make themselves feel better.
I’m getting increasingly concerned about the hyperbolic, inflamed language used on social media when it comes to wellness. I’m fed up of reading how “going vegan/paleo/whatever” will cure me. It didn’t.
I’m fed up of the judgement, obsession & badly researched, unsubstantiated comments, things that are peddled to often vulnerable people who are desperate to feel better. I get comments every day about my lifestyle (too much fruit/too little fruit/eggs are evil/my attitude etc) from people who know nothing about me, short of the small amount that I try to share to help people going through similar things not feel so alone.
I’m fed up of reading that the ability to participate in a ridiculously intense workout is only in the mind. So all I need to do is tell myself that I can run around the block and my knee totally won’t fall out. Right? No. Just no.
While I do admit that taking care of your mind and challenging yourself is important, the sanitised, easily digestible soundbites and images that are shared by perfectly manicured celebrities can often lead us to make decisions that may not be the best for our health.
When you make dramatic changes and do things recommended by inspirational Instagrammers and they don’t work, you feel like you’re somehow doing something wrong. But you’re not. What we don’t hear enough of is that we are all different. What works for one person might not work for someone else. If it was that easy, we’d all pretty much be doing the same thing by now.
Because I’m a very research minded person, I generally spend quite a bit of time looking into things before jumping head first into a new diet or routine. And I always go into it knowing that it’s an experiment. Being vegan worked for me for a bit, but now I know that my body needs animal protein, and it’s struggling with grains. I don’t use labels. It’s too much effort and too ridiculous. I’m trying to find a balance that keeps me happy and tries to make me healthy, and ultimately that’s all anyone can do. We all need support and structure to help us find the right path without jumping into the latest fad that we start seeing all over our iPhones. You can’t open a glossy magazine without being confronted by the latest wellness trend, and while there is usually some evidence as to the value, the flippant way these trends are often presented don’t really do us any good.
And so, I’m kind of fed up with the whole official “wellness” thing. While I’m not criticising a lot of the amazing people who do great work, the current explosion in the commercialisation of wellness paired with a lot of well-intentioned but misinformed people spreading information like wildfire across social media, I think people need to be made more aware and be more careful about the advice they choose to listen to. And likewise, people need to be more conscious about the advice they choose to give when ultimately they don’t really have any place to give it. From journalists to bloggers, we all have a responsibility to not sensationalise healing journeys, and to be cautious and smart about the information we put out there.
This community should be about supporting each other, no matter what, recognising that we are all different and have our own challenges, struggles, successes, quirks and triumphs. We should be honest and open about the good and the bad, and hope that in our own way we can help people achieve the things that they’re looking for as much as possible.