The Difficult Food Choice in Chronic Illness

August 30, 2016

Could I please have the gluten free pizza with no cheese?

I don’t choose to be difficult. 


Chronic Fatigue Syndrome and Food

The Difficult Food Choice in Chronic Illness

Could I please have the gluten free pizza with no cheese?

I don’t choose to be difficult.

Yes, I do feel like at times I am eating cardboard.

Yes, pizza without cheese is extremely joy-less.

Yes, trying to be strict about what I eat is an absolute killer to one’s social life (well, I don’t really have one of them at the moment anyway) and to going out!

I don’t choose to be the one difficult person with dietary constraints that nobody really wants at the dinner party. That one painful guest that replies to the “Please let us know if there are any dietary requirements” with “no dairy, and no gluten (with preferably no grains).”

I don’t choose to be the one that is asking all the questions when ordering at a restaurant “Is there dairy in the salad dressing?” or at a cafe “Could I please have a decaf soy latte?” or a “Bacon and egg roll, without the roll.”

Actually, if I could choose, I would have my pizza with long melted strings of cheese, I would eat that delicious lasagne you so kindly made, and icecream and I would be back being best friends. Oh, and enjoying scones with jam and cream…accompanied by an iced chocolate. Yum!!!

But, at the moment I don’t have a choice…actually that’s probably a lie.

I do have a choice.

I have a choice to treat and respect my body as best as I can. And at the moment, as I journey through Chronic Fatigue Syndrome, my body is telling me it can’t handle dairy, gluten and grains. It is telling me that by cutting these out it is one less battle it needs to fight each day. So at the moment I need to respect my body.

However, this choice is not made easily. One key feature of CFS is fatigue. Fatigue means you can’t do much. Not doing much isn’t helpful when to have grain-free, dairy-free foods means you have to make absolutely everything from scratch. I have not eaten a packaged process food in oh so long. I would give my right leg to be able to have pre-packaged food that I could pop into the microwave, zap away, and 2 minutes later have a piping hot meal in front of me. Or just a cracker, or a snack there ready to go. Yet, if I want to eat, and look after my body, I need to bake and cook from scratch, and all that jazz. So, then there is the constant battle of energy versus need. And don’t even get me started on cost…because the less ingredients are in a ‘health’ food product the more expensive it is, and of course more trendy as well! Really with the diet that I have I could really be the poster child for the kale loving, Acai bowl eating, gluten-free is trendy club! Apart from the fact I detest kale…

I am not a difficult customer because I choose to be fussy, I am not wanting to put people off inviting me over because I can’t eat what they were planning to serve, I am not wanting to undermine those with serious allergies or who are coeliacs. However, in the past, I admit it, as a child I may have antagonised my brother (who had a serious nut allergy) as I ate my all faithful peanut butter toast in front of him.

By now you have probably gathered that I am not trying to follow the latest trend or avoid the latest ‘bad’ foods. However, diet in the chronic illness world is controversial. Everyone has an opinion about what diet you should or should not be following when you are sick. I have friends who have gone raw vegan, others who have gone paleo, at the moment I have friends also quitting sugar and working on ketogenic diets. And that is just the healthy people around me. Have I tried low-FODMAP? Have I done an elimination diet? Do I avoid potatoes? Do I eat enough kale?

Chronic Fatigue Syndrome


What I have learnt over this time is that you need to be listening to your body. I agree that there is definitely scientific evidence of the role of the gut in a number of illnesses. For me, my body tells me it does not like dairy in any form, and it has developed a thing against gluten, grains, beans and really starchy things. And currently at time of writing this it is having a war against something else…the problem is I have no idea what! So at the moment I eat a dairy and grain free diet…which is quite similar to the precepts of the Paleo diet. So sometimes it is easier to say I eat Paleo. However, once you identify with a certain diet, things get a little ridiculous. The number of times I have seen or read that eating Paleo will heal your Chronic Fatigue. Actually, I have seen this written for a number of different diet styles. And most definitely I will be healed if I eat enough kale! I don’t eat Paleo for healing. I eat that way because at the moment that is what my body processes best. It means I am not bloated constantly, and a host of other unmentionable things are not going on. It means that by limiting certain foods it is one less battle my body is fighting.

Each person’s body is unique. Each person’s chronic illness battle is different. Each person’s experience of Chronic Fatigue Syndrome is so so so remarkably different.

This is why I choose to eat what I eat.

I am not choosing to be difficult.

I am choosing to respect my body.

(And by choice, I am not choosing the kale!)

Chronic Fatigue Syndrome and Food



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4 comments

  1. I have celiac disease, so I'm on of "those people" at the party. I'm lactose intolerant too, but I need to get better about respecting my body and avoiding dairy.

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    1. I'm the opposite. Dairy has immediate consequences for me, so I avoid it like the plague...the impact of gluten/grains hits later (but for longer), and so i tend to be more lenient at times towards them!

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  2. I understand so well, being coeliac and allergic to pulses, lentil, onion family, alcohol and intolerant to gassy foods so also low FODMAP. Last Christmas day I was at my in laws and all I could eat was a bit of cheese. Not what you want on Christmas day. They even asked lots of questions so they could cater for me but then though I was just diabetic! I give up! Never eating there again, not that I really did last time!
    The hardest thing I find is also the balance between using energy to cook from scratch verus going without. I miss a lot of meals as I'm too poorly to cook them. Rather than risk a serious life threatening reaction (chemical induced menigitis and mini-stroke, which have happened countless times) I simply go without. It's hard to believe I'm overweight with how little I eat but that's chronic illness for you. I just wish more people understood that it's not my fault and it's not a choice either. I can't just cheat. It could kill me.

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    1. I so hear you! Chronic illness and weight is a nightmare...especially when you look at your diet and realise there is nothing you could cut out, as it is already ticking all the right boxes for healthy eating/what your body can tolerate. And trying to cook well when you are beyond shattered!
      Isn't it scary the huge impact different foods can have on a person!

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