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One difficult thing when being diagnosed with Heart Failure (HF) is telling friends and family. I sent an email as much as possible because it was the easiest way for me. People quickly responded by email or phone. With early emails/calls and initial visits, it soon became apparent that well-meaning loved ones said unhelpful things, if not hurtful.
I asked the members of an HF Facebook group what they thought were the “right” and “wrong” things to say. This is just a sample (and it probably applies to other serious illnesses). There are many more, and they vary, as some patients actually think that the “wrong” things were helpful.
According to the respondents, the main “wrong” things to say were, “You look great!” and “You don’t look sick at all!” People with HF may look OK, but they really don’t feel that way. One said, “It makes you feel like they don’t believe you or you’re making it up.”
Although, one respondent said the opposite: “I appreciate all the ‘you look great…'” She admitted that the illness is not showing outwardly (it is, at the beginning, an invisible disease) and that the person is lying, but she felt OK receiving the statement.
Other well-meant but unhelpful comments were stated: “You did X yesterday, so you can do it again! Cheer up!” Others recommended alternative treatments to a different chronic illness, suggesting quitting medication and eating beets, cabbage, etc., and saying that it won’t kill the HF patient if they have Chinese food once or wine, etc. “it’s all in your head – mind over matter!” and that they are too young to get HF. Never imply or say it is their fault because of their weight, eating habits, or other reasons.
So, what are helpful things to say and do?
Many are just that: offers of help, like offers to hang out and chat or watch movies. Or, if the HF patient is up for going out, let them pick the destination. Understand if the patient has to cancel at the last minute. Offer to drive to medical appointments. Do some grocery shopping if the patient isn’t up for going out.
Don’t presume that if the patient could do something the previous day, they will be able to do something the next day. Always ask if the patient is having a good enough day to do the planned activity or if they are having a not-so-good day and would appreciate something else that is low-key.
Most HF patients are directed to stick to a low-sodium diet. This frustrates well-meaning loved ones who want to bring a nice meal over. Offer to bring some low-sodium foods to their home, like fruit, and if you end up choosing a restaurant, check the menu beforehand to see if there are any items that the HF patient can eat (besides always the dreaded “garden salad, hold the cheese, dressing on the side…”) which is my go-to. Or tell the HF patient the exact restaurant so they can go online and check themselves. Inviting the HF patient out in any situation is a valuable chance to hang out with friends and family, making the garden salad worthwhile.
Once, when out with friends, a friend told the patient: “let me know if we need to slow down,” which touched the patient by using “we” instead of “you.”
Mistakes will be made, and feelings will be hurt. But a little thoughtfulness can lead to positive things being said to a patient dealing with a changeable, severe disease.
Douglas MacGowan has lived in Redwood City for 24 years and has been a part-time freelance writer since 1994, when his first article was published. Over the years, he has written books and articles about 19th-century British history and abnormal psychology. His latest book, “The Irish Sky,” is a picture book about Irish mythology he published with his sister.
He has blogged for Pulse previously and is happy to be back!
