By: Ariel Fixler
What not to say and why not to say it:
1. How are you feeling?
How are you?
Believe in miracles.
Just checking in for an update.
Hi, How are you? Not in terms of illness, I know you don’t like that.
Since your message is humorous I can tell you sound like and are back to your old self. I am assuming you are doing well since you responded or reached out. There are medical miracles all the time so I know you and your dad will be one of those miracles (ignoring the fact that he has Dementia and I have a terminal illness).
These questions and statements seems like a harmless greeting, but it is difficult for patients to answer. Put yourself in their shoes. Dealing with illness and treatments is a lonely, often painful, frightening journey. They could fully answer, opening a Pandora’s box of emotions and physical side effects they are reeling from. They could tell you that your high hopes and assumptions are not based in reality but they probably won’t be that downer of a person. The supporter may not know how to respond or may not be capable of responding. They may not even want to hear the reality of your condition. By assuming being communicative is synonymous with road to recovery is a hard bubble to burst. Sometimes it’s easier to let people simplify your illness and not share the dark truth. Sharing a real and candid response to such a greeting or casual question/assumption can be overload, and emotional “over-sharing.” Typically, the supporter’s replies become delayed responses, or worse, one-word answers to a biblical length explanation of the patients’ true feelings. Or the patient receives responses of pleasantries, platitudes or rash assumptions and simplifications that the supporter thinks will boost the patients’ spirits. This only makes patients shut down. It feels as though the supporter is asking “how are you doing?” to be polite. They ask that harmless question because it’s the right thing to do or, just as likely, the supporter simply doesn’t know what to say because they have no idea what is really going on.
Think first. Is this a genuine question? Are you truly available and present for the real answer? If not, then your caring gesture is lost. Ask it when you have the time to be present. It feels as though the inquiry was another item on a list to be checked off for social conversing. I got a lot of “XO” text messages which were banal and reaching out without delving further. HONESTLY, I couldn’t blame anyone for that kind of outreach, without being able to emotionally delve in much further.
“I am truly here for you. Whether you want to say anything or nothing at all. I am here and can just sit with you, say nothing or everything under the sun. Just call on me.”
“I’m thinking of you and beyond that I want you to know I want to be supportive and take any daily burdens off of you. I want to be the friend that you can come to and feel comfortable sharing with”. (Mallory Saks Zipkin)
“Can I do anything for you or your family? Pick up meds, get groceries, bring items or creature comforts from home to the hospital or run errands? What can I do to make your hospital room more home like?” I wish more people had followed through on my efforts to have them visit my dad and spend time with my mom.
2. “Aww”, “I’m so sorry”, “OMG”, “OY”, “I don’t know what to say”, “Yikes”, “That sucks”, “Ugh”. “Oh wow”. “That sounds awful and so hard”. “Oh no”. “What I’m saying is nothing in comparison to what you are going through”. “I can’t even imagine what you are going through”. “I want to tell you this story, gossip, innuendo or drama because I know it will come as a welcome distraction”. “Miracles happen every day you will be one of them”.
Yes those are normal responses to an ever-sucky situation in life. Stop and think that this person believes that a friend who asks the question truly cares enough to be present when the patient really opens up. These types of responses to a long outpouring royally STINK. To the patient, it trivializes the situation, as though it is no different from the every-day rather than a frightening, life-altering and painful struggle. #thestruggleisreal. (sarcasm noted).
We are so often listening to reply and not listening not to listen.
Friends help best by offering to respond to patients’ descriptions, or simply to say:
“I’m listening. I just want to let you vent. But if you want my input I am here. ”
Supporters feel they should have a handy reply ready. But the better reply is to simply listen without a solution. If an opinion is warranted or asked for, then give one. Steer away from hero worship and bravery and focus on how you can help them with their doubts and feelings about treatment, their unknown future and their fate.
3. “You look amazing”. “You look great”. “You don’t look sick at all”. “You look much better than I had pictured or imagined”. “You seem normal”. “Your personality hasn’t changed even if your appearance has”.
It’s so sweet for you to say a bald head, bruised body, frailty and jaundice is courageous and beautiful. The patient also knows it’s another pleasantry and it always feels insincere and fake. Friends are trying to normalize the situation and the patient and they do so with the best intentions. But patients do feel different, most likely frightened by their own appearance. Do you constantly complement your healthy friends about how great they look? Do you boost their ego and assess their beauty? Probably not, so those messages do not normalize the situation with your sick friends.
“Nothing”. It’s not an elephant in the room; if you think it is, it’s because it’s your elephant.
Sometimes silence is golden and over-complimenting is overrated. We live in an ego boosting culture that assumes we need to pay compliments so regularly that they lose their authenticity and feeling. Don’t tell them you will look great soon; they rock a cropped cut effortlessly and should wear that hairstyle all year long. Just say you love them that’s so much more impactful.
Stay with the pleasure and love in the visit now without further pressure. Patients want the visits, but know that they are struggling emotionally and physically to make it through the time spent with the supporter. It is hard for them to try to think of another visiting time or when they can “be on” for your visits. Especially with unknowns about medical appointments, treatments, side effects, numbing fatigue and pain. Allow them a pressure free visit that doesn’t need follow-up and hyper scheduling. With no agenda or guilt.
Many of the “when can I see you next” inquiries come from people being polite, but who never visited again. This actually hurts more. It’s like going on an uncomfortable date, or social interaction and instead of a polite “goodnight, take care…” you blurt out WHEN CAN I SEE YOU AGAIN??? Or we should totally do this again! You think I could have made a clean break. Shit! (And then think “OOPS”).
What you can say instead:
“I love you. I am here for you and spending this time with you was a gift. Thanks for letting me be there for you. It is all I wanted. I want to check in, but don’t want to overload you, so let me know if it’s too much. I can take it.”
And remember to observe and check-in with the patient to know when it’s time to go. He or she may not be having a good day or starting to show signs of fatigue. Patients have limited energy that they must conserve for coping and healing, mentally and physically. But they also know your visit may be the only social experience they have for a while and feel guilty you came all that way for them. That you took the time out of your day for them. This is why hospitals urge visitors to limit the length of a visit.