Living Successfully with Dysphagia

Dysphagia can have serious impacts on how you socialise with friends, colleagues, and neighbours. Why? Because dysphagia affects how you eat and drink, both of which are foundational social activities.

Shared meals have two main benefits: building inter-community relationships (in the case of communal gatherings, such as barbecues or parties) and making and reinforcing friendship and family relationships [1]. Research has indicated that “people who eat socially are more likely to feel better about themselves and to have a wider social network capable of providing social and emotional support” [1].

Dysphagia can compromise both the ability to eat socially and the willingness, when able, to do so.

A 2013 study by Nund et al found that people who developed dysphagia after treatment for head and neck cancer felt their eating and drinking experiences had been compromised [2].

Some participants cited the inability of restaurants to understand or cater to their condition frustrating [2]. Unlike other diet-affective conditions like Coeliac disease, dysphagia-inclusive dining environments are still relatively rare, which can make social and professional outings difficult. As one study participant said, “we do have problems with restaurants, trying to explain to people my problem … most people don’t understand” [2].

A 2018 study survey of head and neck cancer patients found that 67–73% of the dysphagic individuals surveyed “reported they chose to dine out less frequently, and social interactions were affected” [3].

If you have plans to visit a certain restaurant, call ahead of time to explain your dysphagia and arrange an appropriate solution. While not every restaurant or eatery will be able to accommodate you, most well-established venues should be able to.

For impromptu occasions – like when a friend or colleague invites you to grab a drink or a coffee – consider using thickeners like instant THICK. instant THICK is available in discreet liquid sachets that instantly thicken beverages like alcohol, coffee, tea and juice – simply open a sachet, pour it in, and stir.

Family gatherings, barbecues, or other communal events can also be difficult to navigate for people with dysphagia. Nund et al found that the participants in their study were unable to “share in meals at significant celebrations (e.g., Christmas) [which] separated them from those events” [2].

As one participant put it, “[at] Christmas the family was around and they had Christmas turkey … I was sitting on the lounge with my milkshake” [2].

Socialising successfully at larger events requires two key traits: confidence in yourself, and preparedness.

Drinking texture modified food or fluid while everyone else tucks into a shared meal might feel exclusionary, but it’s important to realise that most of your friends and family won’t feel that way – they’re enjoying the experience of sitting, eating, and talking with you. Modified diets, like vegan, gluten-free, and dairy-free diets, are commonplace, and most people won’t really notice or care what you’re eating.

Being prepared in advance is also helpful. If you dislike eating in front of others, fill up beforehand, and drink thickened fluid at the gathering instead.

If you’re confident about eating with your friends and family, but you’re restricted to pureed food (IDDSI Level 4), consider bringing along Shaped cuisine. Shaped cuisine is pureed food that has been shaped into realistic or creative shapes with Shape It, a moulding powder designed for people with dysphagia. On a plate, Shaped food can look almost identical to real food, but, when consumed, collapses into its original texture, making it safe for people on IDDSI Level 4 diets to eat.

Eating Shaped cuisine means you’ll still be enjoying the same food as everyone else, enhancing your shared meal experience. It also feels more dignified than ladling spoons of puree into your mouth, and can make eating faster and more pleasurable.