Diet and M.E: No, it’s not a simple cure

This is a topic close to my heart that I’ve been meaning to write about for a while. If you google “CFS recovery story” or “M.E recovery story”, you will see lots of people telling their stories and every single person says something different (and I think that’s because so many of those people actually all have different conditions). But quite a few of them say, oh I changed this and I changed that about my diet and now I’m completely better.

And so over the past few years, I’ve tried every single diet under the sun. Sugar free, refined sugar free, gluten free, paleo, high protein, “anti-inflammatory”, “autoimmune protocol”, green smoothies, broths, fermented foods including kefir and sauerkraut, supplement protocols etc etc – I read so many books and visited so many websites, because everyone has a different story and there are so many “natural health” websites dedicated to this. I followed the diets and recipes that books or doctors or other people told me to try, and none of them have helped me feel better. I tried some for just a few weeks (like the autoimmune protocol, paleo diet and low histamine diet) and they caused my stomach to bleed from the inside because I couldn’t tolerate the change in foods. With others, like the gluten free/refined sugar free diet, I did that for a much longer time and saw literally no difference whatsoever except I became more anxious and stressed when I could no longer eat some of my favourite foods which actually worsened my stomach pain and illness! I’m on the autism spectrum, and I can become extremely attached to certain foods, and have a lot of sensory difficulties around food and growing up I have learned which foods I can tolerate and which I really can’t and make me feel “vomity”. These sensory difficulties have magnified. I also have neurological stomach problems associated with ASD from birth which means the nerves and tissue in my stomach are far more sensitive to stimuli and pain, and my stomach reacts in a different way! It’s also incredibly hard for my mum to cook a lot – she is my main carer and makes all my food and is ill herself and has other difficulties with food preparation.

And it’s not just me, there are lots of people with complex conditions which might mean they cannot make changes to their diet or eat the same foods that others can, and also their own carers may struggle to cook a lot too. It’s all too easy to judge, especially in the “natural health” and “alternative health” worlds where things tend to get simplified, especially when people have complex or chronic illnesses – but it’s important to remember there’s a lot that you probably do not know. Lots of people told me and my mum that I became ill because I was a vegan at the time, but they seem to forget there are whole communities in India and other countries who eat only vegan/vegetarian diets (including the Jain community), who are perfectly healthy. Many people often want simple answers to complex illnesses, and find it hard to understand how someone could fall so ill, and so food often seems to be an easy target.

Right now I am eating healthily in a way my body and mind can tolerate, with plenty of vegetables, foods I like, and treats and dessert because food is something to be enjoyed and which brings me a lot of happiness, and my stomach is calmer (as calm as it can be, given the circumstances), and I am much happier with myself than I was with any of those diets or “healthy eating” plans. If I do make changes in the future, it’ll be because it works for me, not for someone else. I know a lot about healthy eating and I think by now, most people with M.E do too. I understand that food can be powerful, and I know that some research shows increasing protein can help when the body struggles to convert carbs and sugar to energy, so some people do go “paleo”.

But you know what? Life often isn’t as simple as that for everyone. Maybe it is for some people. But not for me, and definitely not for some other people like me. Life is complex, and conditions like these are complex, and they don’t always have a simple solution, so please do not ever feel guilt-tripped or judged if you were unable or didn’t want to try a diet you were told to try, or even if you did try it and found that what worked for other people, didn’t work for you. It’s not because you didn’t try hard enough or that you’re not strong enough – it’s because your life and condition is more complex. And if eating your favourite dessert every day is the only way you stay sane through this horrific illness, then keep doing it! Often with M.E there are days we cannot eat at all, or we have to drink shakes when we cannot chew, and many with very severe M.E are even tube fed, so just eating what we can, when we can, and enjoying it and finding happiness in it- is a blessing. Remember: no one else really knows what you’re going through and no one has the right to judge or make you feel bad when you’re sick. 💛

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