Gastroparesis and advice for family members and friends

Gastroparesis is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of individuals.
Effective and compassionate communication is essential to allow individuals with gastroparesis to express and, when needed, discuss their concerns, feelings, and thoughts.
Sometimes it can be very difficult for individuals with an illness to talk about what they are experiencing; trying to have a focused discussion about illness or how they feel can be counterproductive.
Sometimes just ‘being there’ (e.g., going to the hospital with them, being there when they meet their doctor, checking up on them when in hospital) for individuals with gastroparesis is very helpful.
If you have questions or concerns about how you are coping with living with a family member or friend with gastroparesis, feel free to talk to your doctor, psychologist and/or local gastroparesis association.

Nothing you did or said caused gastroparesis

Supporting someone with gastroparesis can be challenging and most loved ones want to do anything to help and they might put their own feeling and needs aside. Doing this for a short period of time might be okay but it’s essential that loved ones look after their own needs and take care of themselves.

If you don’t, it can lead to feeling exhausted and unwell, as well as contributing to depression and anxiety in the carer. You will experience some role changes in the relationship. For example, at times the carer may need to do more around the house, or be the driver. It is important to notice these changes and ask for help and know that it is okay for you to say NO.

Family members without gastroparesis may feel anger, anxiety, frustration, distress, and guilt with regard to witnessing what a family member with gastroparesis is going through. It’s okay to cry, to talk to someone about how you feel and let go of mistakes (if I did this, I should do that) and make sure you put some energy aside for the things you enjoy.

Questions you may want to ask doctors

What caused gastroparesis?
What makes it worse?
What are the treatments?
What are side effects of treatments?
How do I know if my loved one needs immediate medical attention?
Will they need to follow a special diet?
What can I do to help?

Communicating about gastroparesis

Sometimes people with gastroparesis don’t want to talk about their illness and symptoms and at other times they do. It’s important to let them take the lead in communication. It’s also important to let the person with gastroparesis know that you care, love them, that they are not a burden, and that you are there for them.

Be cautious of advice giving. The person with gastroparesis usually has been given advice by a number of health professionals and lots of other people about all sorts of things from diet, to medical treatment, to complementary treatments. Be careful not to undermine their confidence in the treating team by comments about their competence or treatment. If you are concerned about those factors it may be a good idea to discuss whether a second opinion is required.

If someone is going through a flare up, asking a non-specific question like “what is it I can do to help?” might put additional pressure on the person with gastroparesis because they might be struggling to make decisions. It might be more helpful to offer specific assistance, such as “how about I cook dinner on Wednesday and Friday this week or I do the shopping on Saturday morning for you?”.

It’s okay to also keep the conversation light at times. Sometimes, especially during a flare up, it’s hard for patients to hear about more world disasters or about someone else’s illness. It’s okay to talk about something you did, or the person’s interests or the latest social gossip.

Sometimes it’s also okay not to talk and just sit with the person instead, especially if they have just had surgery and have not got the energy for conversation