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What’s The Harm? How I Turned To Wellness Out Of Desperation To Cure My Chronic Illness

This week, I headed up to Leeds to speak at the British Dietetic Association’s Eat Fact Not Fiction event, where I had the pleasure of telling my story of falling for wellness, and why it’s so important that we don’t just dismiss people as stupid for falling for these trends.

I’ve had a really good response, and so I thought I’d share the video with you on the blog (damn brain fog for necessitating reading!) and the text itself if you’d like to read it.

Hi! I’m really happy to be speaking with you this afternoon.

I hope you don’t mind that I’m sitting instead of pacing around in the typical ‘inspirational speaker’ fashion, and that I may spend a fair amount of time this afternoon reading from a piece of paper.

I might get up and move my body around in weird ways or get a bit blank for a few seconds, but that all ties into what I’m going to be talking about, and it’s probably better for all of us that I read rather than babble at you in a pretty nonsensical way.

So please bear with me!

I’m going to start this off with a bit of a spoiler: going…

Vegan
Gluten Free
Sugar Free…”sugar free”
Low Histamine
High Nutrient
Anti-Inflammatory
Organic
and having a Rotation diet didn’t cure me of my chronic, invisible disabilities.

I know, shocker!

It was high on restriction, low on joy, and the most overwhelming result of this was adding another condition to my list: orthorexia.

I know a lot of you probably started cringing by the time I got to sugar-free. But for me, at the time, this diet offered me something that no doctor or dietician had.

Hope.

That’s why today I’d like to talk a little bit about why people fall for wellness, and why it’s important that we don’t dismiss anyone as just stupid for falling for these trends.

Last week someone sent me an article about clean eating and orthorexia, where he described it as a misplaced obsession of the affluent. While I agree with this up to a point, I believe looking at wellness through this sphere can be extremely short-sighted and trivalise a lot important issues.

Of course, there are many people who turn to wellness who have no problems. The Goop’s of the world profit by selling us on unending illness, and girls with genes way more desirable than mine hawk restrictive diets as the secret to the body beautiful that most people will never attain.

But I turned to wellness for a different reason.

I’ve had Ehlers-Danlos Syndrome, a connective tissue disorder, pretty much my whole life. When I was in my mid-20’s, I developed two new conditions that suddenly made my piddly one (with frequent dislocations, subluxations, chronic pain and fatigue – standard, right?) feel like a walk in the park.

I passed out when I sat up. I passed out when I tried to eat (just throwing in some Postural Orthostatic Tachycardia Syndrome and ME in here for fun), and I became intolerant to what felt like pretty much everything, including smells outside. So much so that those smells made me want to, you guessed it, pass out. Histamine Intolerance can be a real bitch, especially when you become intolerant to your own digestive process.

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.

So while we can look at people turning to wellness as a problem of the vain middle class with too much time on their hands, wanting to fit their perfect arse into £100 Lululemon leggings, it’s important to recognise that a lot of people turn to diet “cures” out of desperation. It’s 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’.

That being said, these people have clearly never met my body in its natural state.

I ended up believing that any fluctuation in my health, my **chronic**, incurable, fluctuating health) was my own fault.

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 bore you with 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.

I’ve heard these things more times than I’d like to recount.

I didn’t know what to do, so I kept switching between diets, becoming more and more extreme before going on insane binges.

I kept trying because I was so desperate to be well and live the life of a ‘normal’ 20-something. It wasn’t until I spent several thousand pounds on IIN (I know, I’m embarrassed to admit it), that I realised that most of this was nonsense.

Not quite their intended outcome, but hey.

Being taught by the very people whose messages I’d been reeled in by, I realised how much of it was rubbish. The more I read and listened, the more I realised that most of these people had no qualification to talk about nutrition. The final nail in the coffin came after an argument with one of my ‘coaches’ in the mandatory Skype sessions, where I was disagreeing with some advice on a scientific basis, and was told we had to agree to disagree, because ‘feelings’ and religion were just as valid as facts when giving health advice (and apparently I needed to respect that).

Over the years I’ve tried so many different diets. I’ve read all the books. I did a “raw food challenge” that left my stomach so bloated I couldn’t move. A girl I know gushed that 80-10-10 was finally the answer, calling me after one day of guzzling down more fruit than most people would eat on an exotic island in a month, hopped up on sugar after being on a Candida ‘no sugar’ diet for months before.

This isn’t about any one diet. It’s about our wider relationship with food, how to ensure everyone has the fundamental scientific knowledge to battle woo and pseudoscience, long-term treatment for long-term health conditions, a more responsible media (good luck, right?) and the way we treat each other online.

The plant-based, raw, paleo, goopshite conversation can, has been, and will be, replaced by whatever is the new sexy reason that people misinterpret a study which explains why we’re all sick and fat.

A lot of people, myself included, find it easy to deride people for believing fads, misunderstanding science, and following these trends. But I believe it’s important to address the reasons why.

I was never much into science, but I consider myself an intelligent, critical thinking person. I fell for all the 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 continue to share proper evidence from qualified professionals in ways that are easy to understand and attractive to the general population (who don’t have the time that many of us have to spend on Twitter!)

After all, a balanced diet and lots of water doesn’t sound all that sexy, and doesn’t offer the miracle quick-fixes that many people are after.

I’m lucky that I managed to escape it (although I wish it hadn’t cost me a few grand in course fees and thousands more in supplements, appointments, and tri-weekly grocery trips to Whole Foods), and all that remains of that time is self-blame whenever I have a flare up.

As a sick person, these messages are damn hard 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.

We must never underestimate desperation, or deride people who are looking for hope. Yes, seeing wellness wankers splashed across our newspapers, or smiling inanely on television is incredibly frustrating to those in the know, but to those who don’t, it gives these messages a sheen of respectability. Why would they get all this coverage if they were dangerous?

The more we can debunk them (and that’s for people way more qualified than I) the better.

In order to understand why these quacks are able to prosper, we need to understand the multitude of reasons people are drawn to them, and it’s not quite as simple as it looks at first glance.

When it comes to people like me who got caught up, we need to look at holistic care for long-term conditions. Although treatment may be limited to the very limited research, many of us are just left to get on with it, with no guidance or support for figuring out how to live, let alone exist. Wth proper care, consideration, and most importantly, people who listen, don’t deride, and take time to actually care, we can do a lot to help protect people from desperately looking elsewhere for help.

I was once sent to see a dietician who was an expert in FODMAPS. This was when I couldn’t really eat anything. She was telling me to eat foods I had severe reactions to, and was telling me to cut out ones I could eat safely. I felt patronised and not listened to. I’m all for taking advice and following experts, but as someone who has spent more time in hospital than anyone should have to, I know when I’m being ignored or just treated like a box to be ticked. I’ve had my EDS diagnosis questioned because I’m not hypermobile in my thumbs, and have had experts push drugs on me that have already made me worse than anything else. It has made me an expert at knowing which medical professionals actually listen and care and which don’t.

It’s sad when a positive experience is the exception rather than the norm.

I know this is a huge funding issue, and there’s no easy answer, but our system is broken. And this is where wellness seeps in.

Last week someone messaged me saying ‘it looks like you’ve got a lot of this diet healing stuff figured out, can you give me advice’. When I refused and told them to see a dietician, they messaged me privately, talking about the GAPS diet. I referred them to science-based medicine, and warned them about becoming scientifically literate and staying safe, and that, no, again, sorry, I can’t give you diet advice. She then went on to say that official diet advice has been wrong before and nothing has helped her and that the Paleo diet is scientifically backed. All I could do was refer her, again, to as many online resources as possible, including Anthony for a bit of a sweary break.

People are desperate for answers, and desperate for help. I’m 28 now, and I have the quality of life of someone four times my age. I struggle every day to get out of bed and find ways to work and live and do all the things someone in their twenties should do. So when these seemingly innocent options are floated in front of my eyes, it’s pretty damn hard to avoid.

We must never deride people for looking for help elsewhere, and work hard to make sure that we can play wellness at its own game. We’re seeing great strides, and I’m excited to see what’s to come.

Thank you.

10 Comments

10 Comments on What’s The Harm? How I Turned To Wellness Out Of Desperation To Cure My Chronic Illness

  1. Sarah
    June 15, 2017 at 11:55 am (5 months ago)

    Good article (I read the text!). I was put on a massive exclusion diet (no wheat, eggs, dairy) by a well-meaning Harley Street Consultant. It worked in that keeping a detailed food diary helped show that actually I could eat boiled rice and chicken and still have nasty attacks of IBS, thus indicating that my problems were not diet related. It also made me miserable and caused weight gain. The Wellness problem is exacerbated by the fact that some of us can’t “listen” to our bodies (I.e. they go through phases of tantrums and there’s little we can do about it) and as you so clearly state, we’re pretty desperate to fix the problem so we can enjoy a reasonable quality of life. Balance is key, and we all need to find our own ways of achieving this, sharing these stories is vital, so thank you for finding the time and energy to share yours.

    Reply
    • Natasha Lipman
      June 15, 2017 at 11:57 am (5 months ago)

      Thank you, Sarah! Yes, your point is really important – a lot of this is it’s really hard for other people (let alone ourselves) to accept that a lot of these issues aren’t diet-related. Even if they cause gastric issues, our bodies love those tantrums and all we can do is wait them out.

      Yes, having a much stricter diet MAY make me say 5% healthier, but I’m 50% happier eating in a way that makes me happy (within the limitations that I know I have).

      I hope your day is as good as possible today, and thanks for taking the time to comment!

      Reply
  2. Crys
    June 15, 2017 at 1:28 pm (5 months ago)

    That was always one of the things that got me, when doctors never listened that I had tried something before or that there was something that I couldn’t do. It also always irked me that people would push something on me when I’d either already tried it or something similar to it.

    I think, and this is just personal opinion, that the people who do that, including doctors, are trying to glorify themselves.

    After all, if a person says their allergic to something or that they’ve already tried a high fiber diet and it didn’t work, their serious.

    I also agree with you and understand the desperation part. I’ve been there. Still there, actually. And I refuse to give up hope.

    It was a wonderful post! So much that I can relate to!

    Reply
    • Natasha Lipman
      June 15, 2017 at 1:32 pm (5 months ago)

      Thank you, Crys!

      Yes, I understand that desperation. Even though I know so much better now, it’s still hard to not think ‘what if’ about all of this stuff.

      I also agree that there is a big issue with many people in the medical profession – there’s often an arrogance there. But it’s also on us patients to be able to communicate in the right way. I understand why a doctor may not listen (if they don’t me) because of experiences with other patients. It’s a really tough one.

      Thanks for taking the time to read and comment!

      Reply
  3. Silvia Logan
    June 15, 2017 at 9:30 pm (5 months ago)

    This a great article, Natasha. People in the Internet are always saying if one eats a raw organic vegan and fruit diet with no meat, fish, poultry, dairy, and eggs and eat no sugar and do heir own juicing or follow a ketogenic diet, it cures them of all diseases and gives them more energy.i cannot even prove whether it is true or false.

    Reply
  4. Petra
    June 19, 2017 at 10:35 am (5 months ago)

    I don’t know much about chronic illness but it’s interesting to hear your perspective. I can understand that people will try everything to cure themselves especially if the conventional medicine doesn’t work for them very well. I would probably do the same if I was in your shoes. But I know that everybody is different and will have different reaction to different types of diet so while one type of diet may work for somebody, it may not work for somebody else. We are all individuals with different genes and predispositions.I don’t think it’s wrong trying but I agree, using science-based approach with a help of dietitian is a better way forward.

    Reply
  5. jen
    June 19, 2017 at 3:33 pm (5 months ago)

    I read the text rather than the video – but it’s so important you keep saying this stuff- thank you Natasha.

    You said you had a good response, were there questions afterwards? Did people come and talk to you?

    Reply
    • Natasha Lipman
      July 7, 2017 at 9:36 am (5 months ago)

      Thanks, Jen! Yeah, I spoke to people afterwards, there were some questions, and there was also some good stuff on Twitter around it. Hopefully I’ll be able to talk more about these issues soon.

      Reply
  6. Lori
    November 5, 2017 at 5:42 pm (3 weeks ago)

    Thank you so much for this, Natasha. I also fell for “wellness,” both before and after I was bulimic. I would find myself equating everything that happened to my body as a result of the food I was eating. A stomach grumble here? Definitely the sausage I ate. A pain there? Obviously because I ate non-organic kale. I see the extreme clean eating trend as dangerous and ideological. Thank you for speaking so clearly about the topic and your own struggles. All the very best to you!

    Reply

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