When Someone You Know has a Feeding Tube

Learning that someone you know has a feeding tube can be challenging. If you're very close to the individual, it may also be a shocking and stressful experience for you. If discussing enteral nutrition makes you uncomfortable, it might not be the best time for your friend to talk with you about it.

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You might need to process your emotions first. It's okay to tell your friend that you're finding it difficult to discuss enteral nutrition. You could assist them in finding someone more at ease with the topic by searching for support groups or reaching out to a community or religious leader.

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However, if you're willing and want to offer support, here are some tips for listening, conversing, and spending time with this person. Effective communication and adaptability are crucial for providing support.

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Talking with someone who has a feeding tube​

When talking with someone who has a feeding tube, the most important thing is to listen. Try to hear and understand how they feel. Don’t make light of, judge, or try to change the way the person feels or acts. Let them know that you’re open to talking whenever they feel like it. Or, if they don’t feel like talking right at that time, that’s OK, too. You can offer to listen whenever they’re ready.

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It's common for individuals with a feeding tube to experience periods of anger, depression, or withdrawal due to uncertainty and fear. These emotions are a natural part of grieving the losses associated with enteral nutrition, such as health, energy, time, and the enjoyment of tastes. With time, many people learn to adapt to these changes and move on. However, some may require additional support from groups or mental health professionals to cope with the adjustments brought on by enteral nutrition.​

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Individuals with a feeding tube may express concerns about death, their future, or their family's well-being, as well as other fears. While a response isn't always necessary, being prepared to listen to their pain and the difficult thoughts they wish to express is important. If they seek your perspective on their illness, treatment, or any aspect of their experience, it's crucial to be open and honest, yet refrain from addressing questions beyond your knowledge.

 

Individuals with a feeding tube may experience guilt, feeling responsible for their dependence on the tube. This guilt can be exacerbated by questions from others about past actions that might have led to their condition, a phenomenon known as stigma. Such stigma can lead to self-blame, feelings of isolation, depression, and a sense of lacking support. It may also impact their approach to treatment, overall quality of life, and willingness to seek follow-up care. When someone blames themselves for their medical condition, it's important to offer reassurance and support. Let them know that while the past cannot be changed, they have the power to manage their life and care throughout their treatment journey and beyond.

 

It's common to be uncertain about what to say to someone with a feeding tube, regardless of the closeness of your relationship. In the workplace, where relationships vary greatly, this can be especially challenging. Whether you're acquaintances or have developed a close friendship over many years, navigating this conversation can be difficult.

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Demonstrating your interest and concern through expressions of encouragement or offering support is crucial. Often, the simplest acts of concern or merely listening can be the most significant gestures you can make.

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Try to make your response honest and heartfelt. Here are some ideas:

• "I'm not sure what to say, but I want you to know I care".

• "I'm sorry to hear that you are going through this".

• "How are you doing?"

• "If you would like to talk about it, I'm here".

• "Please let me know how I can help".

• "I'll keep you in my thoughts".

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Individuals with a feeding tube might sometimes feel apprehensive or less optimistic. While one may not fully understand how they feel, offering encouragement can help uplift their spirits.

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Respect the privacy of someone who has a feeding tube​

If someone tells you that they have a feeding tube, you should never tell anyone else unless they have given you permission. Let them be the one to tell others. If someone else asks you about it, you can say something like, “It’s not up to me to share this, but I’m sure (____) will appreciate your concern. I’ll let them know you asked about them.”

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Learning through informal channels that someone has a feeding tube might be uncomfortable. It's appropriate to inquire with the informant whether the information is public. If it isn't, it's probably best to remain silent on the matter. However, if the information is public, acknowledging it thoughtfully could be kind. You could express your concern gently by saying, "I heard about your situation, and I want you to know that I'm here for you."

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Feeling angry or hurt is natural if someone close to you has withheld news of a feeding tube or diagnosis. Regardless of your relationship's closeness, the individual may need time to come to terms with their new reality before sharing it. It's important not to take this personally. Instead, concentrate on how you can offer support now that you are aware.

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How do I get over feeling uncomfortable around someone who has a feeding tube? Feeling sorry for them, or feeling guilty for being healthy yourself, are normal responses. Enteral nutrition can create a great deal of uneasiness for people who don’t have experience dealing with it. Don’t be ashamed of your own fears or discomfort. Be honest with the person about how you feel. You might find that talking about it is easier than you think.​​

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Enteral nutrition often reminds us of our own life experiences. If you are close in age to the person with a feeding tube or if you are very fond of them, you may find that this experience creates anxiety for you. You might notice feelings that are like the person who has a feeding tube: disbelief, sadness, uncertainty, anger, sleeplessness, and fears about your own health. If this is the case, you may want to get support for yourself from a mental health professional or a local support group. If your work company has an Employee Assistance Program (EAP), you can contact a counselor that way. You can also use other sources of counseling, such as your health insurance or religious support services.

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How does someone cope with enteral nutrition?​

People develop all kinds of coping styles during their lives. Some people are quite private, while others are more open and talk about their feelings. These coping styles help people manage difficult personal situations, although some styles work better than others.

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Some people may become withdrawn and isolated from family and friends. Some people find it helps to simply be hopeful and do what they can to maintain that hope. Hope means different things to different people. And people can hope for many things while facing the challenges of feeding tube dependency.

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Don’t assume that someone who is positive and hopeful must be denying the fact that they have a feeding tube. Making the most of every day may simply be their way of coping. As long as they are getting medical care, they’re probably not in denial, and their way of coping with a feeding tube should be respected.