Pain is possibly the most difficult topic to discuss in an illness situation. The greatest challenge is the fact no words or phrases can fully express a patient’s pain experience. But patients also worry when they do try to talk about their pain, they’ll appear to be complaining, especially in cases of chronic pain.

When someone is first diagnosed with a serious illness, family and friends are eager to hear pain reports so they can try to help. Where does it hurt? How intense is the pain? Talking about pain helps caregivers and friends feel useful, especially since they often can’t actually make the pain go away. It’s hard to watch loved ones hurt.

But when pain becomes chronic, patients worry continued discussions position them as complainers. They worry caregivers will grow weary of their reports, so they often stop talking for fear of damaging a relationship.

Caregivers can also get frustrated at their continued inability to relieve pain that lingers over time. Despite all they do, the patient still feels pain. So when caregivers can’t seemingly make a difference, they also stop talking, as it makes them feel inept and helpless.

Despite these valid concerns about complaining, the fact is talking about pain can help, and it’s an important way for patients to find emotional support. Humans use language to connect and create meaning of their experiences…the good, the not-so-good, and everything in between. Talking about pain is important and needs to happen.

So how should patients and caregivers talk about pain in an illness setting?

First, both patients and caregivers must remember “listening” is as important as “talking” in a conversation.

Second, both patients and caregivers must understand “listening” does not mean “doing.” Listening is the conscious act of first hearing what someone has to say without trying to assign judgment to what is said or assuming the listener has to do something about what is being said. Judgment and action can come later if appropriate. The overarching goal of listening is to simply be present and hear what someone has to say.

Keeping the above in mind, patients and caregivers should try to schedule daily “check-in conversations.” These check-ins should be as brief as possible and at mutually agreed-upon times. Perhaps talking at breakfast is good. Or when getting ready for bed. Try not to pick times that are hectic for either party, such as when getting kids off to school or driving into work.

Also choose a setting that is comfortable and has limited distractions. Try to sit and be at eye-level with one another. Checking in by phone should only happen if no other face-to-face option exists.

Patients should start check-in conversations by describing any pains they feel at that moment or that were experienced within the past 24 hours. How are they experiencing the pain? How are things similar? What has changed?
Caregivers should simply listen and remember their sole purpose is to listen.

When patients finish their reports, then caregivers should describe how the patient’s pain experience affects them. Are they feeling overwhelmed? Helpless? How are things different? The same? This is the patients’ turn to simply listen.

Once each party has said what they have to say, then they can discuss how to respond to what was said. Maybe there is something the caregiver can do to reduce pain, and steps can be taken in that direction. Or maybe there is something the patient can say to reassure the caregiver their actions are important.

Be assured there will be many times when there isn’t anything more or different each can do about the pain. But hopefully each party’s chance to be heard and understood can help get them through those tougher times.

The ultimate goal of check-in conversations for both patients and caregivers is to have the sense each has been heard by the other, and each is committed to managing pain as best they can. When done in an open and caring fashion, daily check-ins can help all involved get through the painful side of illness.