I have just finished reading the book The Woman Who Fooled The World by Beau Donelly and Nick Toscano, and it has made me think a lot about my weird foray into the world of wellness, and the very small part I may have (unintentionally) played in peddling dangerous misinformation online.
As many of you know, I’ve had health issues since I was 9. When I was at my sickest, I felt so unwell that I thought I was going to die.
And I wanted to die.
I was in my mid-twenties and confined to my bed, unable to work, unable to function, with no sight or hope of a future ahead of me.
Many of us with chronic illnesses often find ourselves in a weird kinda catch-22: we have a totally normal life expectancy, but often have decades and decades of suffering akin to someone with a terminal illness.
My pain levels had become so severe I could barely think. I couldn’t sit up or eat without sickening palpitations, and had developed intolerances to what seemed like everything out of nowhere. After a particularly bad new year’s eve spent on the sofa, having exhausted all the medical options available to me, I decided to do what most people do when they’re desperate and out of medical options: turn to Doctor Google.
At the time I wasn’t even looking for things to try and ‘cure myself’, it didn’t even occur to me that that was a thing. I just couldn’t eat and the only medication that worked made me lactate (and y’know, I really didn’t want to be paranoid about leaky boobs for the rest of my life).
I was suicidal. I was put in a psychiatric hospital, but the medication made my psychotic (again), so I left. I was starving and the world made me want to constantly pass out (which, on top of the Ehlers-Danlos Syndrome I’d had since I was 9 was just too much to handle). I wanted to figure out if other people were experiencing similar issues and how they were managing to eat.
That was all. I just wanted to eat. And I wanted some control.
As I scrolled, I quickly came across blogs written by young women like me, who had health conditions like mine, which had struck them down in the prime of their lives.
But these women were not grey, unwashed, and living in crumpled t-shirts in bed. They were glowing, SMILING (what was that?!), and often posing with the very fruits and vegetables that they said had made them…better?
Why had no one told me this before?
Not to toot my own horn, but I consider myself to be an intelligent, critical thinking person. I’m also an extremely critical person, and I’m pretty skilled at poking holes in most things (which, yes, can be a negative, but also makes me good at my job, so shh).
But as I read, the advice seemed so simple, so harmless, that I couldn’t stop thinking about it. Some of these women even had exactly the same conditions as I did, and they were apparently back to truly living their lives just because they changed their diet. It never occurred to me that the misinformation could be misleading, false, or even just well-intentioned but dangerous correlation-causation stuff.
Overnight I went (and ha, I haven’t written this for a while): vegan, gluten-free, “sugar-free”, low histamine, high nutrient, anti-inflammatory, rotation…ermm…there was probably more but I don’t remember now.
Before then, I’d just been trying to eat whatever I could keep down. Some granola. A banana blended with milk and strawberries. I’d stuff my face with bread and cheese and then curl up for the rest of the day unable to move. It was more about trying to get calories in rather than nutrition, so those “nourish your body from the inside” messages made sense to me.
I’d lost two dress sizes in a month or so. Eating half a banana had me rolling around on the floor in agony. If I was going to eat, I might as well ‘fuel myself’.
I turned to Instagram as a way to keep a food diary. Before then, I didn’t even realise it was a social network in its own right. I just thought it was a place to add a filter to a photo before uploading it to Facebook. But the blogs told me it was a ‘thing’, and so I thought that if I kept everything written down, I’d be able to keep track of what I was doing and maybe find some other people who were doing similar things. This was my first post:
Oh god, that #clean.
Instagram isn’t that difficult to figure out, so I quickly started following accounts for ‘inspiration’. At the beginning, I found other people on the chronic illness hashtags who were doing the same thing for me, and it was the first time that I felt like I wasn’t the only one going through this in a way that didn’t feel negative (I hated the nature of the Facebook support groups).
Looking back at these posts now is funny, just in terms of the horrid Instagram etiquette, but using the food-related hashtags that were popular at the time, the likes on my posts quickly grew. As I saw people using powdered ‘superfoods, I bought them and tagged them in my pictures. These got reposted and my follower number ticked up.
When you’re confined to your bed (or forced out of the bed to the sofa for some variety), your world becomes very small. So it was a huge source of comfort, and a weird unexpected ego boost, when people started commenting on my posts and sharing their own experiences with me. I felt like I’d found people that truly understood.
The vast majority of the accounts I followed had near-identical content. Huge stacks of gluten-free vegan pancakes and bowls of porridge loaded with fruit, talking about the health benefits of these foods. I fell for it hook, line, and sinker, it didn’t seem like it was doing any harm. So I started to ‘pretty up’ my pictures and share my day-to-day experiences in the caption.
Sundayyyy. And that means pancakes! Clearly I’m at the end of my juice cleanse. Don’t worry, I eased out of it yesterday! Although last night I passed out on the tube. It was too hot and too crowded and my blood pressure just bottomed out and I got crazy dehydrated and just faceplanted. Honestly, the worst thing is how embarrassing it is! Mother told me I should have asked someone for a seat, but who is going to believe a perfectly healthy looking 25 year old? I’m just feeling a bit miserable today. I thought I was getting my illnesses under control and now it’s just 😞 sigh. So I’m taking it easy today and cheering myself up with a stack of my pancakes (recipe on my blog) made with @organicburst maca, @lucybeecoconut Oil and @therawchocolatecompany cacao nibs, topped with homemade almond butter and organic berries. A post shared by Natasha Lipman (@natashalipman) on
I finally felt like I had some control over my health.
After all, that’s one of the messages that’s so pervasive in wellness: health is a choice. Make the right decisions and you’ll be rewarded with health. Genetics are only a blueprint, you can switch them on and off if only your lifestyle is as perfect as it needs to be.
I can’t quite explain just how enticing that feeling is. I don’t remember a time in my life that I haven’t suffered from pain. When I was younger, I could push through it just enough, but as my twenties hit, things just got worse and worse. Every decision I made, hell, every move I made, every morsel of food that crossed my lips had to be a calculated determination as to whether it would make me more ill. I couldn’t work, I couldn’t have a social life. I couldn’t do all the things I’d grown up just expecting that I could.
And I was never allowed to wear heels or go ice skating…so y’know life is hard.
Being shunted from doctor to doctor who would either give me pills that didn’t work, pills that made me sick, or refer me onto a physio who couldn’t really help, was wearing. Being in my twenties, being bubbly, ‘knowing how to behave in public’, and ‘not looking sick’, meant that even the professionals who were meant to help me, diminished my pain and suffering to at least a minor extent. It took me 18 years of being in pain to be prescribed morphine. And even that doesn’t work enough to make most days bearable.
I’ve been told by pain management specialists to expect less of myself. I’ve been told to push through. I’ve been told to just do the exercises and not be lazy, even though I knew they’d do me harm. Everything was pushed upon me.
Being a patient can often be such a passive experience, especially when your opinions and expert knowledge of your own body are dismissed. I mostly had older men telling me what I should do, probably seen as a silly little girl who was saying no to medications (THAT I HAD ALREADY TAKEN AND MADE ME SICK SLASH PSYCHOTIC) just to be contrary. So when it came to wellness and Instagram, I finally felt like I was in control. And that was such a powerful feeling. Even if it was just about what I ate.
Less than a week ago when I told my GP that things have been so bad recently I wish I could just go into hospital for a bit because then it felt like I’d get some support, instead of just being abandoned, he even told me that we know there’s nothing that anyone can do and it all just has to come down to me, myself, and how I cope. Great.
God, these captions are killing me.
The people I followed were trying eating all these weird and wonderful foods that I wanted to try. So I did.
People asked me how I had the energy to eat this way. The truth is, it was literally all I did. All my time went on getting, cooking, and eating this way. It’s not like I had anything else to do. I was sick.
After the first few months, I started to feel a bit better. Some of my reactions decreased, my energy was up a bit, and my reactions went down. I, of course, attributed it to my diet.
What I didn’t realise at the time was that I had also come off of the medications that I think triggered the histamine issues, and had made me sicker than anything. I also didn’t think about the fact that when I started the diet I was at my lowest and most desperate health ebb – so the only way from there was up.
At the time, I was just ‘sharing my journey’, which is what everyone else was doing. I wrote about how I was feeling, the foods I was eating and why. I didn’t think that people would see me saying I felt better, or saw me trying to heal myself, and would copy me. I started a blog to share the ‘recipes’…basically bland foods with superfoods and fruits added.
I’d write about the ‘health benefits’ of ginger and oats and other foods, getting the information from other big wellness bloggers, not thinking that their information would be misleading.
My followers grew. I got international press coverage, where my story was told but never questioned.
My social media diet was a insular, self-perpetuating feedback loop.
I got invited to wellness launches, full of glow-y girls in leggings. I didn’t feel like I fit in.
I realised that most of them had, or had at some point, an eating disorder.
I was subsisting off of fruits and vegetables and almond butter. With the odd binge here and there. I became scared off non-organic produce.
I became scared of organic produce that wasn’t from Whole Foods.
I spent nearly every minute thinking about food, preparing food, talking about food, researching food.
I kept reading about these girls that were doing so well, and believed that I too could one day be one of the glossy girls laughing into a bowl of salad.
I watched every documentary I could, bought every book that reinforced this world view. In my naivety, I didn’t believe Netlfix would show a misleading film, didn’t believe big-names could endorse books that could be dangerous.
I kept reading about how the food we ate had the potential to heal or harm.
I needed healing so badly. I just wanted to be better.
For the first time in my life. I just wanted to be better.
But I wasn’t.
Take aside the obvious orthorexia that was flourishing (I was also a misinformed but judgmental nightmare about everyone else’s food choices – hey! it’s like I grew up around the internet!), my health started to decline again. I had flare up after flare up that left me feeling horrific and suicidal again and again.
At first, that led me deeper into wellness. Going raw, spending hundreds of pounds a week on juice cleanses (my dad would drive me across London), getting acupuncture, doing anything I could to counter them.
One thing we don’t often talk about in situations like this is how wellness can perpetuate self-blame amongst people who are ill. If the message you’re hearing are all about self-responsibility and the body’s innate ability to heal itself, you start to feel as though it’s somehow your fault if you’re failing. It also didn’t help that people online constantly had opinions on my food choices. Recommending other things, telling me I was doing it wrong.
Sometimes you just want to not think about histamines and have a fruit platter in the afternoon! Ok careful enough about my balance and rotations that I can enjoy this without any adverse effects. Healing with food? Check! Don’t forget to enter my shoutout competition! All you need to do is share one of my pictures and tag #nutritiouslynatasha10k and @nutritiouslynatasha 💕 A post shared by Natasha Lipman (@natashalipman) on
It took 6 months of feeling like I needed to eat meat again to actually stop being a vegan because I felt like I was failing.
I felt like I was letting down the cause. And I felt like I was letting down my followers for not getting better. I was just getting worse and worse again. And I realised that people had started telling me that they were inspired to try and do the same thing as me…and I couldn’t be to blame for putting someone else’s health at risk.
I finally plucked up the courage, and received a whole torrent of abuse. I was a morally terrible person for eating meat (not taking into consideration the fact that my loathing of legumes and intolerance to soy meant I was severely protein deficient and three weeks into eating meat again I felt significantly better than I had in months, my skin was less grey and over the months my hair no longer looked like straw).
I started to think that maybe this diet wasn’t all it was cracked up to be. It wasn’t working for me…had those dozens of books I’d read been…misleading…? Could these other people have got better for reasons that weren’t related to their diet? This was a time (all those two or three years ago) before many skeptics had nailed social media, but I managed to find some blogs that I devoured with as much intensity as I had the wellness ones. I started spending time with people who weren’t in wellness circles.
I cried the first time I ate pizza again because I felt like I could be poisoning myself. But I was also suh happy.
I slowly started to realise that the very small percentage of health benefit I was getting from such a strict diet wasn’t worth the severely disordered eating I had developed. It took years to change, years to start reintroducing foods that I’d become pretty much brainwashed to believe were poisoning me.
My histamine intolerance had mostly cleared up, leaving only a few issues (the saddest being a really bad reaction to my beloved yeast). Many of my Instagram friends from the time were also going through similar revelations, which helped. Again, it’s nice to not feel alone.
But some of the abuse. And a lot of the well-meaning messages that were actually abusive. The literal calls and comments from people telling me that it was my own fault that I was sick, just look at my diet. The literal calls and comments from people telling me that I was sick because I wasn’t willing to put the work in and because I didn’t believe I could be healed….for accepting the fact that I was actually…disabled.
So, you know what, even though the book inspired me to write this, this isn’t a story about how I was duped by Belle Gibson. I followed her and read what she put out. I downloaded the Whole Pantry app and made a recipe or two from it, but she wasn’t my ‘guru’. What she was, however, was one of the dozens of people I followed online who reinforced a particular world-view, that they themselves had snuck into my brain, that my body had an the innate power to heal itself, if I only gave it the chance.
And with all of this, OF COURSE I don’t hate healthy eating, and OF COURSE nutrition is important (especially in conditions like mine where nutrient deficiency is so common). I’m not hating on anyone for being a vegan. I’m not hating on anyone for deciding to eat in a way that feels healthy to them. But I know first-hand how easy it is for desperate people to cling onto anything to try and help them feel even the tiniest bit better and in control. There’s so much moralistic talking and privilege around food discourse, that often ignore the complicated lives of people with disabilities.
I still suffer from the guilt and self-blame whenever I have a particularly bad flare. My body often just goes into clusterfuck mode for no reason. And that lack of control is bloody hard to accept. I sometimes think if I change my diet and got more restrictive, it may help. But even if it did 10%, it’s not worth getting back to that place mentally.
It took a really long time to accept myself as disabled. I clung onto just using ‘chronic illness’ to define my health, because I felt like it was still something I could fight. Disability felt…permanent. But because it felt like a fight, I thought I could keep pushing through. And crashing. And pushing through. And crashing.
And although my overall health has continued to suffer, this acceptance has been life-changing. I still feel like I have to fight just to function every day, but I’m not fighting myself to the point of knocking me out for months or years at a time. I can advocate to try and make society understand, to try and make our environment more conducive…instead of blaming myself and trying to fix something unfixable in myself.
People online like to tell me that when I say things like this (or when I continue to write about my struggles and the reality of my health that I’m ungrateful. That if I worked harder, I wouldn’t feel this way. That I don’t embrace the good in my life. All of these mindsets are part of the same problem I have with wellness.
I work so hard every single day just to exist in my body. I work so hard even single day to have a life and a job that I’m so proud of. And it’s hard for me to feel proud of those things because they’re nowhere near what I thought I’d be accomplishing by 29.
I get so upset and offended when people message me things like this out of the blue, or send me dangerous unsolicited advice about their latest homeopathic whatever (hey, water!), diet idea or whatever the fuck new thing it is that if I just tried then I could shut my moaning mouth the fuck up and actually get better.
I write a lot online about how hard I try, but obviously I still don’t share everything. I overwhelmingly write about my challenges because I think they’re important for people to understand, and it’s also cathartic to shout into the internet instead of crying all the time. But these people don’t know me, don’t know anything I’ve been through, or tried. I’ve got to a place in my life where I’ve accepted that this is my lot, and I’d much rather learn and work my arse off within that reality than be offered false hope after false hope and be blamed when I fail.
And I am so sorry beyond words if I ever made anyone feel like that when I was deep into wellness. It’s my biggest regret, more so than anything I went through. I feel the same thing whenever I see any other chronic illness bloggers trying diets or sham treatments like this. But I don’t blame them (I do blame the ones that make a career out of selling a ‘cure’, or using that as part of their story to commercialise a business), because I know what desperation can do and how hard we cling onto any hope of healing and control.
It’s so important to say that rejecting wellness doesn’t mean rejecting your health. As my body has declined (partly due to the fucking assault last year – wanker), I’ve had to try and figure out things I can do this year to try and help. It’s really hard, especially now I’m trying to juggle having a “Real Job” with increasing pain and fatigue. And that involves a whole lot of appointments and soft tissue work, and learning how to safely exercise, even if that is a session on practicing getting up safely from the sofa.
I think that’s more than enough from me for now. Thank you for making it this far. It has been interesting looking back on this time with the perspective that years and food can give you. I’ll end by saying that since I changed my diet and became an unapologetic chronic illness blogger and smasher of bullshit, I’ve lost thousands of followers on Instagram. But it’s worth it.
Don’t beat yourself up over this. There’s an important psychological function from feeling like you can take control of a situation. Chronic illness feels very out of control. Initially this foray into Wellness may perhaps have prevented a deep depression? It’s a sliding door scenario you can’t know now.
I do think the clean eating movement has some merits and it’s likely better for people with chronic illness conditions than a typical Western diet full of junk food. The problem is more the orthoexia and obsession. I seem to have dodged that (I think). I am gluten free and lowish carb. Also refined sugar free, but my symptoms are immediately worse when I deviate from this. I’ve always taken some of it with a pinch of salt and some humour. When I see a vegan clean eating recipe the first thing I think is what meat or dairy would improve it?! I find paleo recipes handy for my needs but have 0 belief in the theory behind it.
I think partly I might have dodged the orthoexia bullet because my other half prepares food, so I’ve never got obsessive about food preparation.
That’s a really good point – it definitely gave me something active to focus on (and obsess over) which helped stave off a lot of horrible feelings!
This really resonates – thank you! I spent the first year or so of M.E./CFS thinking that if I could just eat healthier or learn to meditate or drink more water, then I would feel better / get well. I also spent way too much time blaming my past behaviour for the current situation (not enough sleep, eating the ‘wrong’ things, etc.). Once I accepted that it wasn’t anything I did and decided to make the best of my situation, limited though it was, that I started to feel better in myself. It didn’t cure the chronic illness but made it way more bearable. I stopped thinking of it as my body ‘judging’ me for having had the occasional fish supper or hangover and realised it was just rotten luck.
Thank you, Cath! I’m so glad you’ve got past that self-blame. It can be difficult when people make you feel as though you’re somehow responsible for making that realisation!
I always hear those articles from the Internet, if one avoids meat, fish, poultry, dairy, eggs, and desserts and become a vegan, do their own juicing, take vitamin supplements, meditate, do yoga, and infrared saunas, they are cured from all chronic illnesses which are not true. Most of the people who write articles and books like that are not even medical doctors, but homeopathic or some quack doctor. Homeopathic doctors do not have the same medical knowledge as real doctors do.
Very honest and moving post. With posts like this, as someone who did the journey through the whole clean eating, orthorexia and came to this conclusion you make an important contribution to explaining the danger and the problem with this kind of thing. I often hear said….What harm does it do if someone follows a diet to find health or wellness. It didn’t do you any favours and at times made you less well and possibly malnourished. And often the danger lies most woth those most vulnerable like people with cancer or incurable conditions.
I have a long term health condition and I have been told lots of things i should eat/not eat and there is a wealth of dietary guidance some of which would be harmful.
I was a registered nutritionist before I got diagnosed and that, in my case, protected me from following something that would be harmful to my health through malnutrition. It is so tempting, so alluring. ..
Your message of acceptance is an important one. I fought as hard as I could to not let my condition change my life. Always fighting is tiring and through a bad spell where pain management was elusive I went to a medical hypnotherapist/psychologist. The biggest lesson I learnt was that acceptance is very different to resignation. Very different from letting my condition rule my life.. It was fighting in a smart way, in a flexible way that gave me the upper hand.
Thankfully we have found something that works for pain and it has been life changing but the lesson in acceptance was so helpful in dealing with all the nitty gritty of living with something that is incurable. She was very good at a time when stuff was hard work.
And it has helped me cope that there have always been people close to me who have been dealt a worse hand who cope amazingly and inspire me.
Good on you for standing up and publicly saying what you just shared and taking the flak that is involved. Many people would just quietly slip off the social media map. Your message is important and valuable. Thank you for sharing so eloquently.
I totally get it. Thank you for writing it. I have stopped fighting and started accepting more and it probably doesn’t look that different from the outside but it feels so different. Also the blame and judgement from outside and in that I can’t get better is a thing. For sure. So nice to have it put into words. We can only do so much. I control everything controllable (I have to) but I can’t do any more than that and I am only human. And I’m still getting worse… and that’s ok. Xx
This was such a good read, thank you for being so brave for putting it all out there. I wish you well on your continued journey towards wellness – physically and mentally!
Yes. To all of this.
Thank you!
Wow! Still processing all of this, but wow! Definitely very interesting and somehow it immediately reassured me. Thank you 💗
Living with a chronic illness is the hardest thing in the world and unless you have been there you have no idea of the effort it takes just to get through a day. Don’t let anyone judge you, you are doing brilliantly. Keep on truckin’ xxx
How I so relate to everything you wrote. My 4 children and I all have EDS and some of us dysautonomia and mast cell issues too. I have spent way too much time, money, and energy over the last decade on naturopaths, supplements, special diets, etc. I so badly want to help my kids eat in a way to prevent progression of EDS that I have become obsessed with different diet plans. In the end, I feel i may be giving them anxiety around certain foods and unnecessarily removing foods (like gluten) that really are not causing any problems. I have narrowed my own safe foods lists down to just a handful of foods in an attempt to eat low fodmaps, low histamine, gluten, dairy and tree nut free. I do have true allergies to dairy, tree nuts, bananas, and sunflower seeds. I am ready to heal mentally around my fear of eating certain foods and the reactions i associate with them but don’t want to feel worse and do not how where to start. Thank you for having the courage to post about this.
Natasha, I came to your website searching for an article you wrote about this 2 years ago, and ran across this one. Thank you so much for sharing this. I came across the other article while I was deep in the thick of orthorexia and it ignited a lot of my deep wounds with the movement, namely the subtle and NOT so subtle blame the wellness message puts on the ill. It rang so true to see my delving into this as a desperate attempt to control my situation and alleviate my suffering, but I felt angry, resentful and anxious and FEARFUL about food for the first time in a lifetime as a foodie! I feel grateful that I got out of that crippling lifestyle after only a few years, but still am dealing with the repurcussions of it 1.5 years later… Now I am newly diagnosed with IBS and my disordered eating is flaring up again with fear about food. I am wondering if it would be worth it to hire an Intuitive Eating dietician to help me navigate these waters. I’d love your feedback on how you proceed with caution in this?
Wait, I’m confused. So clean eating didn’t help? And you’ve now reverted back to eating meat?