The Do’s and Don’ts of Talking Tube Feeding: 5 tips when communicating with us tubies!

Faye shares her top tips to follow when talking to a tube fed individual.

This article shares Faye’s personal experience of tube feeding. All views expressed belong to Faye and do not necessarily reflect those of Talking Tube Feeding.

Navigating the world of tube feeding can be difficult, what can add to that struggle is facing people who may not be able to communicate because they don’t know how to approach the topic.

Only a few weeks ago I was in a conversation with someone who was trying to be overly polite and inoffensive, which is thoughtful as they didn’t want to hurt my feelings. However, this led to a breakdown in the conversation because they didn’t want to offend me or say the wrong thing. It became slightly awkward for both of us.

Based on experiences like these, I want to share my 5 top tips on finding the language to use when interacting with someone with a feeding tube.

Faye’s image

1. Ask Their Preference

Everyone is unique and different, we all have our favourite colours, names and pronouns that we like to use to describe ourselves. It gives us a sense of personality, belonging and identity. The same goes for people with feeding tubes. If you’re unsure of the correct terminology for the feeding tube or things surrounding it, don’t be afraid to ask the person what they’d like it to be referred as.

For example, I would call myself a “tubie”; my tube has been a part of my life for the past 14 years and will be with me for the rest of my life, and so I feel like it’s a part of who I am, and I am happy to be recognised by this. Others might prefer other terms such as “person with a feeding tube”, “tube fed ” or other medical terms.

You’ll also find that people may use slang terms with their close friends. These are all very personal and its always best to ask the individual what terms they prefer to use.

2. Don’t Make Assumptions

There are many reasons why individuals can be tube fed and representation in this area definitely needs to increase.

A while back I was approached by a lady that asked ‘are you winning?’ while referring to my tube. This interaction came from goodwill and care, however my recommendation is never to make assumptions about someone’s medical condition or needs. If someone was in a position where they were terminally ill, this conversation may have had a negative effect on their mood. Ask questions, be curious, but be respectful.

3. Choose Empathy Over Pity

Feeding tubes can be used to increase a person’s quality of life and many tubie’s lead fulfilling and enjoyable lives. We have a reason to need a feeding tube but that doesn’t mean we allow it to totally dictate and control our lives, there is no need to pity us.

Instead, chose empathetic language if we decide to share things about our medical needs with you. Try to resonate, or better yet, ask educational questions to widen your knowledge or ask how better you can support us. Talk to us like your average human. I have likes and dislikes just like you and can talk your ear off about the latest video game I’m playing or travels I’ve been on!

4. Be Curious, Not Intrusive

I’m a firm believer in ‘questions are good’. It raises awareness, education and understanding. However, not everyone is the same as me and we all have our own opinions and limits on what we feel comfortable sharing. Also, the way questions are asked is very important.

It's important to show interest but also be mindful not to pry into personal details about anyone’s medical history. Respect the person’s boundaries and let us decide how much we wish to share with you. If ever you ask about a feeding tube, be prepared for the person to be reluctant to discuss with you; it is the tubie’s right to share with you whatever they wish.

Think about how you ask your questions and always make sure the person is comfortable with sharing while letting them know they don’t have to share if they don’t want to.

5. Don’t be afraid to get it wrong

We are not all medical professionals; we don’t know everything in the world.

We are humans who make mistakes, so go ahead, speak to us and don’t be afraid to mess up the wording. If you are approachable, kind and speak in a nice way, we will happily advise you so you are aware of the best language to use. If you really don’t know how to word it, try these things out:

  • Ask for our preferred wording.
  • Let us know you may get the words wrong.
  • Ask what we call the tube.
  • Make a conscious effort to use our preferred words after you’ve been told.
  • Mess up rather than making it alien and awkward.

Communication is so complex, it involves language, body language, tone of voice and more. A lot more than I can cover in this article. But if you can take anything away from this it would be: we are all humans, we have likes and dislikes just like you, and our entire world doesn’t revolve around our medical conditions.

Talk to us as you would any other person, be curious and ask questions whilst being polite and respecting our boundaries. Feeding tubes are different but not scary.

Why don’t you try out these tips in your next conversation!

Faye’s image

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Nestlé Health Science has worked with healthcare professionals and families to create the articles and videos on this website. All views and opinions expressed are their own, and may not always reflect those of Nestlé Health Science. Tube feed formulas are foods for special medical purposes for use under medical supervision. Blended diets should only be used after consultation with your healthcare professional.