Hi, my name is Yvonne and I am a noncompliant eater.
I don't have an eating disorder, I have dysphagia as a result of head & neck cancer treatment & we need to focus on these two things to help patients live their best food life.
What do I mean by non compliant? Refers to dietary habits that do not adhere to the recommended guidelines for managing swallowing difficulties caused by cancer in the head and neck region.
I took the knowledge and skill of the clinicians and then used that to fit my personal eating framework. I mostly ignored any (the little there was) advice on don’t eat this, don’t eat that and avoid hard, crunchy, citrus and chilli, as a I tucked into a very painful bag of salt & vinegar chips immediately after radiation & chemotherapy.
On most accounts this was sage advice, but like any “normal” human being you tend to believe whole heartedly (generally speaking) what medical practitioners tell you and in the past I had no reason to disbelieve them and I didn't now, except with eating and statins (a story for another day).
Commensality, my social life, well actually just my life and all that stretched before me there were a number of potential reasons for non compliancy (or non adherence ) and that was, I refused to give up on my food life I refused to give up on mouth feel a term we use in wine making and cooking.
I was likely suffering PTSD, I was likely suffering depression and I know I was suffering attitude and once my donkey legs are out, that's it, good luck trying to change my mind.
I just refused to believe that my food life was going to change and I tried everything, if it was in front of me, like a baby I reached out and I stuck it in my gob. Is that going to work? Can I chew, swallow that? How long is that going to make me cough for, will I inhale that the wrong way? The dangers were almost limitless but I refused to give in to dysphagia.
I pushed the boundaries and when I reached their outer limits I pushed a bit further.
I was overwhelmed with everything my treatment was doing to me, I was doing this solo and some days it was all too much. I reverted back to what I was told to do, just use the PEG tube feeder when you get tired.
Here's a summary of non-compliant eating for head and neck cancer dysphagia:
Inadequate Texture Modification: Non-compliant eating may involve failing to modify the texture of foods appropriately. Dysphagia-friendly diets typically require foods to be pureed, minced, or mashed to facilitate safe swallowing. Ignoring or disregarding these modifications can increase the risk of choking or aspiration. I learnt this by trial and error and making myself familiar with IDDSI
Poor Moisture and Lubrication: Dysphagia diets often recommend moistening foods or using gravies and sauces to enhance lubrication and make swallowing easier. Non-compliant eating may involve neglecting these recommendations, resulting in dry and hard-to-swallow foods. Knowing the 5 mother sauces is extremely helpful.
Improper Food Consistency: Individuals with dysphagia may be advised to avoid certain food consistencies, such as sticky or chewy foods, as they can pose swallowing difficulties. Non-compliant eating involves consuming these restricted foods, which can increase the risk of food getting stuck or causing discomfort during swallowing. Yes I am such a bad ass.