Fighting For Food In Invisible Illnesses

Luke Hassan
September 13, 2021

Many of us would take food for granted, as part-and-parcel of the experience of being human. Sure, food does not come without its challenges – we all struggle at times to decide what to make for dinner each night. But imagine what it would be like for food to be difficult 24/7, because:

The mental energy it takes to plan and prepare anything more than simple food options is enough to give you a migraine, and/or;
At times, the physical energy to get out of bed to make food, or even to get to the food, does not exist, and/or;
There is a choice between using energy to make food or shower today, because that is your capacity before you must be horizontal again, and/or;
Everything you put in your mouth makes you super full or uncomfortable, gives you shortness of breath or heart palpitations, or ends in symptoms like pain, nausea, bloating and distention, and/or;
You seem to react to everything you eat, resulting in diarrhoea, constipation, or reflux / regurgitation / vomiting.

This is the reality for many of the people who live with Myalgic Encephalitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS) and similar, related conditions – collectively known as “invisible illnesses”. They are called this because, from the outside perspective of a passer-by or acquaintance, you may not even know that the person who lives with one of these conditions is unwell.

These conditions are still unknown quantities to many clinicians – so when a patient presents with one (or more) of these illnesses, nutrition can be far down the list of priorities. Although this is understandable when trying to help a patient to be medical stable, nutrition, as discussed before, is key to our functional capacity as humans, and even more so in people who live with invisible illnesses.

Despite this, many people with invisible illnesses continue to struggle with their day-to-day food needs because the above descriptions (which are real, unexaggerated presentations from patients of mine), have been overlooked. Unfortunately, this has led to many not receiving specialised nutrition/dietetic input for years after receiving a diagnosis, potentially prolonging a lesser quality of life than what they might have had otherwise.

If you are not convinced yet, here are a few more compelling reasons why specialised nutrition/dietetic care is vital for many who live with these invisible illnesses:

One: Food is fuel. Many patients with invisible illnesses (even if not diagnosed with ME/CFS) have some level of fatigue because of the toll that these conditions take on the body’s energy levels. When sleep is unrefreshing; heart rates accelerate for long periods of time without warning; joints are constantly out of position; or pain is present at all hours of the day, the body becomes chronically exhausted. Food provides a literal source of energy for these people, to help increase their capacity. By making food more fatigue-friendly we can assist people to make better choices with whatever capacity they have. Importantly, this will decrease their reliance on short-acting, chemical sources of energy that they might use to ‘push through’, which ultimately worsens their fatigue in the long run.

Two: As clinicians, one of the first things we learned at university was Maslow’s Hierarchy of Needs. The lowest level of the hierarchy (and therefore, that which must be fulfilled first) is basic, physiological needs, which include, you guessed it, FOOD. This means consistent and secure access to food MUST occur before the body can truly engage in higher-order management strategies. Therefore, as people with the aforementioned barriers to nutrition are provided strategies and education to improve their food security, their ability to engage in other avenues of treatment/management will be enhanced. This contributes to better overall treatment outcomes for patients, and consequently, a better quality of life.

Three: Unfortunately, little formally conducted, academic research exists on the ‘exact’ diet that is best for people with invisible illnesses. Formulating dietary advice and providing individual care for these patients is a complex task that requires engaging with many areas of the literature – from research on nutrition, speech pathology, behavioural therapy and psychology, cardiovascular and gastrointestinal medicine, occupational therapy, and the exercise sciences. With so many factors to consider, deciphering this literature is difficult even for trained and practiced professionals, let alone those with limited capacity for daily tasks. What is more unfortunate is that there is a plethora of misinformation out there, particularly on the internet, that makes self-sourcing good quality, non-harmful information even more difficult. Dietitians are experts in pulling apart fact from fiction when it comes to nutrition advice. Early intervention with good nutrition care helps to lower the risk of well-meaning individuals, who are simply eager to feel better, falling into the traps of following poor, un-informed, and potentially harmful advice.

Conservative management centred around lifestyle-related modifications are core to the long-term management of invisible illnesses. However, until now, nutrition and diet have taken a back seat in their care. My mission, along with my colleagues at Active Health Clinic, is to make that a thing of the past. ‘Make Invisible Illnesses Visible’ is a call to arms echoed by our patient group and professional partners to introduce current and future allied health and medical professionals to these debilitating illnesses and the people that live with them, so that more are aware of how to SEE these people and get them the care that they deserve. It is our hope that with more interest and more research, invisible illnesses will become as well-known as diabetes and cardiovascular disease – and as such, we’ll know how to treat them as well as we do those now ‘common’ conditions.

Written by content contributor, Luke Hassan.

Luke is an Accredited Practising Dietitian at Active Health Clinic.

Luke’s mission is to ‘make invisible illnesses visible’ by advocating for those with Invisible Illnesses and supporting them in their nutritional health. He is the lead dietitian at Active Health Clinic in Melbourne, where they specialise in providing care to people who live with Chronic Fatigue Syndrome, Chronic Pain conditions, Dysautonomia and Hypermobility Spectrum Disorders. He is passionate about making quality nutrition accessible for every BODY, no matter their functional capacity.

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