Food Shaming

I’ve written about the Food Nazis several times before.  Y’know, those people online who say that following this diet or that diet has helped them enormously and you can’t possibly want to improve your health because you’re still eating sugar/gluten/dairy/processed food/high histamine food (whatever that is) or “food with no nutritional value”.  And whilst I know that eating healthily is vital to………..well, health…………I also know that when you’re chronically ill there are days when you’re lucky to have eaten at all let alone have spent hours preparing raw foods washed down with a green smoothie.

There is so much emphasis on food in the management of chronic conditions that’s it’s easy to feel really down on yourself if you’re not able to follow the legion of (often contradictory) dietary advice circulated online.  But it’s important to remember that hardly any of this information has been backed up by research and even if it has been scientifically proven to help you are sick, your life is already ridiculously hard and you are doing the best you can.  Don’t let anyone shame you into thinking badly of yourself.

I thought I’d share with you a few pearls of wisdom I say to myself when I’m having a wobble and doubting that I am doing all I can to manage my diseases:

  • Jak, you live on your own with limited money and zero help.  Be proud that you manage as well as you do.
  • You don’t just have hEDS.  You also have MCAD, M.E. and cripplingly painful endo and adeno.  On top of that you’re going through the Menopause which even healthy women find difficult.  Be kinder to yourself.
  • Nausea kills your appetite.  If you haven’t eaten a thing all day and the only item of food you fancy is a packet of Wine Gums they at least contain sugar and sugar equals energy – it’s better than starving.
  • As a species, we have managed to survive and thrive for 2 millennia without chia seeds or sprouted peas.  And you have managed to survive for 24 years of chronic illness without them too.
  • What works for one person doesn’t work for another, especially when that other has both MCAD and Histamine Intolerance.
  • I live in the north of  England, not California.  It’s sodding cold here and a green salad is not going to keep me going when it’s -10C outside and I have to walk the dog, bearing in mind I have M.E and my muscles don’t work properly.  Without some seriously stodgy carbs I’d never get out of bed.
  • Your life is ridiculously restricted.  If you want to binge on Pringles and Jaffa Cakes washed down by pint mugs of Yorkshire tea every now and again knock yourself out.
  • If all you have the energy to make for dinner is oven chips and a fried egg you’ve just consumed 14% of your RDA for Vitamin C, 26% Thiamin, 16% Riboflavin, 16% Niacin, 30% B6, 18% folate , 11% B12 plus Vitamins A, D, E & K alongside Calcium, Iron, Magnesium, Phosphorus, Potassium, Selenium, Zinc, Copper and Manganese not to mention 490mg of Omega 3 fatty acids, 26% of your RDA of protein and beneficial to POTS sodium.  Processed or quick food does not equate “nutritionally deficient” whatever the food nazis tell you and it’s better than not eating at all cos you’re too knackered to make anything.
  • I am doing the best I can under very difficult circumstances.

I watched a talk on the proposed dietary research EDS UK want to undertake recently and while I’m sure, in an ideal world, eating a diet rich in nutrients which aid collagen synthesis and wound repair would be beneficial let’s not forget that lots of people with hEDs have a digestive tract that is so fucked up they are being fed via a tube into their stomach or heart.  Advice on a new diet isn’t going to help them much, or the estimated 10% of people with hEDS who also have MCAD and who are on restricted diets of varying types and severity.  So to spend £250,000 on a treatment which is only going to help a proportion of hEDS patients makes me kind’ve pissed not to mention left out in the cold.

I’m really, really, fed up of being left out in the cold simply because my illness is complex or severe.  Surely to goodness those people at the severe end of the spectrum are the ones we should help first not last?  They are the ones whose entire lives have been robbed, whose futures are bleak and who are suffering the most.  Instead, they are the ones ignored while the focus is on those easier to treat.  It’s been just the same with M.E. for decades until, of course, world renowned geneticist Ron Davis’ son became severely ill which has resulted in the severely affected being studied by Nobel prize winning scientists in a race against time to save his life.

We are not all on the same journey – the path for some is smooth, flat, concreted and accompanied by helpful companions and for others is rocky, pot hole strewn, uphill and crawled alone.  You can only do what you can do and don’t let anyone tell you that your best isn’t good enough.

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11 thoughts on “Food Shaming

  1. Karen, The Walking Allergy

    The more I hear the less convinced I am of the veracity if modern ideas of healthy food. The school is a horrible source of food judgement for us. My daughter is 8. She can’t eat any raw fruits or vegetables, and only a few cooked fruits. She can drink concentrated OJ, but not fresh squeezed, as it’s been heated. And she is told that applesauce, canned peaches, jam and OJ aren’t ‘healthy’. A couple of years ago she was in such a state- she wasn’t eating anything, we couldn’t figure out what was up. Turns out the teacher went through and pointed out (in front of the whole class) what items weren’t ‘healthy’ in each child’s lunch, and told that those foods should be saved until after school. I was so angry… Poor thing was getting heck from us because she wasn’t eating, and being shamed to not eat at school. She now knows that for her, any food she doesn’t react to is a healthy food for her. And no, teacher, you may NOT food shame my child. (The teacher had no idea why her lunches were so ‘bad’. Daughter is quite happy to leave adults in the dark if they don’t bother looking for the light switch, but it can backfire occasionally. Of course, if her teacher had cracked her file open, she’d have had a better idea, kinda important to know if a kid in your class has severe allergies, joint and vision issues and is gifted. Not to mention that one of her parents simply can’t have certain foods in open packages in the house, that juggling food in our house is a nightmare….).
    The Canadian government wants to put warning labels on foods high in fat, salt or sugar. There is no evidence of causality between those and health outcomes, even the correlation is tentative. Things like ‘increased salt and increased BP are correlated’, doesn’t make it causal! Maybe people who are prone to high blood pressure prefer more salt (like me..my BP is much more stable when I eat a teaspoon of Himalayan salt every day). Or maybe it isn’t the salt in packaged food, but the preservatives or corn or soy fillers that are the problem (like me). And the idea that everybody should be eating the same diets, that any health advice is universal across people and places is an utter folly. If something helps 90% of people, it might not help, do nothing, or actually harm the other 10%; a concept that seems to escape a lot of people.
    I feel ya on this one, can you tell? My only fruit and veg I can tolerate right now is 1-2 tbs of jam/day, and one orange every two or three days. Yes, I eat jam. It’s better than nothing! And when you know that no matter what you eat, it is going to hurt like hell, an almond croissant is much more likely to get in than saltines and almonds. I’d give up eating in a heartbeat if I could.

    The best source of information about how to manage my MCAS is my body. It’s as simple as that.

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    1. Jak Post author

      I could have cried reading about the experience of your daughter Karen – to food shame a child is outrageous, especially one with special dietary needs 😦 I’d give up food too if I could then I wouldn’t have to worry about reacting after every meal or spend all my limited energy on cooking x

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  2. Janjay

    I watched that video too Jak and I must admit it worried me.
    I wondered how severely the woman giving the talk had been affected prior to the recent health issue (which she was advised would probably right itself) that led to her having time to research her condition. She mentions symptoms but seems to have been working etc and never felt the need to investigate the cause of her problems before. I wouldn’t want to judge but I often find people who talk about these ‘cures’ seem not to have been so severely affected anyway.

    Again trying not to judge, I found it all a bit condescending. She was interested in nutritional science and had much more faith in the ‘new knowledge’ in that area than I have, but did she really not think that people hadn’t looked at their diets and tried all kinds of things over the years? She is not the first, though maybe the scientific evidence is limited. There are protocols available for free that have helped some people, like the Cussock protocol.

    I am also aware that researchers seek recognition. She said they weren’t giving out the details because they wanted to test her diet first and it may not work for everyone. Fair enough but why not give it out now with that proviso and still go on with the testing? After all, if is potentially beneficial why make people wait? Her standard dietary advice at the end I found intellectually insulting given that she is addressing people who have probably been managing their condition for years!

    Listing vitamins and what symptoms deficencies can cause is pointless if your own symptoms are caused by something else, not a deficiency. I do believe that people’s nutritional needs vary and that this isn’t taken into account when doctors do tests and pronounce them within normal (often too low) limits. But we are also constantly told that having more of something doesn’t necessarily lead to increased advantages.

    I suppose what really worries me is that this has the potential to be another one of those things that may benefit some people but becomes another way of limiting treatment for others. All we have to do is go off and eat the right things, its probably our own fault for not doing so in the first place, what do we expect? Oh and do some exercise!

    As a vegetarian for 40 years, long before anyone felt they had to cater for non meat eaters, I am fully aware of the need for healthy food. I am all for people eating as health a diet as they are able. This is severely restricted by other conditions though, as you say Jak, and the body has an amazing capacity for taking what it needs from what it is given. Any food is better than no food! Many people with EDS rely on tube feeding.

    It seems strange that as the government persists on underfunding the NHS, further restricting access to healthcare, the answer to so many health issues suddenly becomes just to eat well and exercise! If I sound cynical it’s because I am!

    Joking aside, I do believe that eating reasonably decent food and staying active is beneficial to most people’s health, particularly from a preventative point of view. I just dont want it to be seen as the sole answer to severe conditions and used as another stick to beat patients that have suffered long enough.

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  3. Lindsay

    I completely agree. I can tolerate some high-histamines just fine, others are a no-go. On nauseous days, especially when there have been a few in a row and I’m starting to lose weight, I eat what I can , regardless of nutritional value. And sometimes that means some biscuits and chocolate.

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