Communication to manage pain
- Like all people, people with pain live in a social environment. Pain may affect your relationships with other people. Relationships and support are important for living well with pain. Having good support can help symptoms, mood, and sense of well-being. It can be hard to talk about pain to family, friends, and people we work with.
- Sometimes trying to talk about it can make the pain worse.
- Talking to people who do not understand what it is like to live with pain is challenging.
- Adjusting to new roles, like being cared for by friends or family, can be hard.
- Pain can cause memory problems or make it hard to organize thoughts enough to talk about the pain.
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Talking about your pain
Pain can be hard to explain to others. Each person experiences pain differently.
- Most people can relate to acute pain that only lasts for a couple days or weeks, but chronic pain can be harder for people to understand if they have not experienced it.
- Deciding what and how much to share with others about pain is a personal decision, based on who is listening (spouse, friend, employer, coworker, stranger).
- A person living with pain may want to share a lot of details with a spouse, close family member, or best friend.
- They may want to share less with people they don’t know as well.
- They may not share much with someone they barely know or an employer.
Here are some points to think about when talking about pain with people who do not have pain:
- Who is my audience?
- Think about what they may do with the information you share with them.
- How much do I want to tell them?
- You do not have to share anything with anybody.
- Sometimes, like for work, it may be best to only share information that is related to a specific need, like accommodations.
- It is important to share enough information to get the support you need.
- Deciding how much to tell someone is best decided based on the next item:
- When this conversation is over, what do I want the other person to know?
- First, think about what you want the other person to know from the conversation.
- For example: you may want your employer to know that you have a condition that causes pain but that it can be managed with rest breaks every 2 hours.
- Or you may want your spouse to know that being in pain is really scary for you and that you would like to feel supported.
- Knowing what you want the listener to get from the conversation helps you to focus the conversation.
- When this conversation is over, what do I want the other person to do?
- Sometimes we think we are telling the other person what we want, but we are not clear at all! For example:
- One night, Lisa's pain and fatigue were really high. She told her husband "I'm not feeling well tonight."
- Her husband responded by leaving her alone, so that she could rest quietly.
- Lisa became upset because she felt like her husband was not there for her just when she was not feeling well.
- Lisa assumed that her husband would know what she needed without having to tell him.
- Next time, it might be better for Lisa to tell him what she needs.
- She might also ask him to do something specific.
- For example, she could have said, "I'm not feeling well tonight. Can you just sit and read to me for a while?
- Think about what you want to ask for and be sure to say your request clearly and directly when communicating with others.
Avoiding common pitfalls
- It is tempting to assume that misunderstandings are because of the other person.
- Good communicators use words that help the listener understand their message.
- There can be problems in communication when a person:
- Does not listen to what is being said.
- Plans what to say next, instead of focusing on what the other person is saying.
- Forms an opinion about what the other person might say before he or she says it.
- Responds to what he or she thinks the other person said, not what the other person really said.
How do you communicate?
Knowing the style that you use to communicate can help you be a better communicator. There are three common communication styles. Which do you use most?
- Aggressive communicators stand up for their rights, even if it hurts others.
- They may speak loudly, act superior, or bully others.
- Their goal is to control, to win, and to force others to lose or back down.
- Passive communicators find it hard to express their honest thoughts and feelings.
- They tend to put other people’s feelings before their own.
- They tend to feel victimized, and may be secretly angry and stressed.
- Effective communicators share their needs.
- They show respect for themselves and others and can compromise.
- They speak directly and act confidently, while communicating.
- Assertive communication gives you the best chance of being understood.
Use a communication style that will help your family, friends, and healthcare team understand what you are going through. Once they understand your needs better, they can help you.
Although different cultures have different values relating to communication, there are a few simple but important ideas that may help you communicate well:
- Think about what you want to say before you say it.
- Stay on subject, not getting sidetracked.
- Be direct and to the point while sharing your needs and concerns.
- Don't try to cover more than one or two things, even if there is more you want to talk about.
- Communicate that you have more to discuss and plan another time to address additional issues.
- Listen well, and try to avoid talking over other people.
- Conversation shouldgo back and forth instead of just one person talking
- Acknowledge other people's feelings.
- This lets them know that they have been heard.
- Acknowledging the feelings of others may help them better understand your concerns.
- Find ways to compromise.
- It might be hard sometimes to agree with other people, but make a suggestion if you can see a way to compromise.
- Be specific.
- Try to focus on what someone actually says or does.
- Avoid making vague or broad accusations.
- Example: Instead of saying, “You always do this!”, try saying, “When you do this, I feel dismissed.”
- Share your emotions.
- Share how you feel about someone's behavior.
- Tell people clearly what you want them to do next time.
- Try to be specific and realistic.
- If you realize that you were unclear in your request, tell the other person that you take some of the blame and that you want to help find an answer.
- After the conversation, think about how your conversation went and consider what to work on for next time.
A sample scenario
A person living with pain wakes up one day and realizes that his/her pain is worse than usual. They know that doing their normal activities will not be possible, so they tell their spouse, "I am having a bad pain day." The spouse, trying to be helpful, responds, "Why don't you stay in bed for a bit and see if you feel better," and leaves the room, to let the person with pain to rest. The spouse's response has come from a good place: They want the person with pain to feel better, so they offered a solution and gave space to the person with pain, thinking it would help them feel better.
The problem, however, is that the person with pain was hoping for a different response. When their pain is bad, they know that their spouse's encouragement and partnership helps them feel better. They also know there are some things that need to get done for their family, and they are hoping their spouse will get them done. The response from the spouse did not help the person with pain feel better or help with getting the family things done.
There is plenty of "blame" to go around in this situation.
- The person with pain was not specific with their communication.
- Instead, they assumed their partner would know what they wanted and needed based on how they described their pain.
- The spouse, on the other hand, guessed – incorrectly! – what the person with pain wanted and offered a solution.
When communicating with others, it can be helpful to consider the following recommendations:
- A person without pain may never fully understand what it is like to live with pain.
- This is not meant to be negative but is realistic.
- Pain is complex and can be difficult to understand.
- The person living with pain cannot assume their partner will know what to do without a specific request.
- This can also help you recognize that you might not know what it is like to be in their shoes either.
- Be specific with your "ask."
- In the situation above, the person with pain thought they were asking for help by describing how they were feeling.
- This resulted in miscommunication.
- Many people find it hard to ask for help but we know that a well-stated request is always better than implying what is needed.
- Living with pain is a shared experience that includes spouses, family and friends.
- During early stages of a pain condition, support may be more emotional to the person with pain.
- Providing help with household tasks and child care can be helpful, especially when done before the person with pain asks for help.
- Roles may change over time, especially if the person living with pain cannot do things they used to be able to do.
- If a supporter becomes a caregiver, more challenges may come up in the relationship.
- These changes can affect how people relate to each other.
- It can be challenging to maintain partnerships, especially for spousal care partnerships.
Here are some ideas to help maintain healthy balance in relationships:
- When possible, separate "caregiving" and "non-caregiving" time.
- It is important to share the pain experience but just as important to remember that the relationship is not built on pain.
- Set aside time to remember your shared interests.
- Redistribute roles- when someone living with pain cannot do a specific task because of the pain, then it can help to trade tasks for something they can do.
- Get creative in finding new ways to do things.
- Many times, the person with pain can still do an activity, but needs to change how they do it.
- Work together with your partner to find ways to work around the pain.
- Be honest about your pain.
- Do not pretend that it does not hurt when your partner asks how you are doing.
- Let others (like your healthcare team) know how you really feel.
- Ask for help when you need it, specifying what you need. It can be hard to ask for help.
- Try asking in a way that makes it clear what you need.
- Say thank you when someone gives you a compliment or help with something.
- Talk about communication problems.
- If it feels one-sided or tense between you and a family member, talk about it.
- Write down your hardest communication problems so you can calm down and practice before sharing your feelings.
- Talk about things other than your pain. Your relationships shouldn't center on your pain.
- It is important to remember that part of the "shared experience" of the care-partnership includes talking about how things are going and how they could be made better.
- Falling into the trap of focusing only on day-to-day needs is easy- this can lead the relationship to drift off course.
- Check in on the relationship and talk about it with your partner.
- Pain can make it hard to communicate by:
- Changes in speed of thinking
- Ability to plan and organize thoughts
- Making it hard to find the right word
- Pain can make it hard to respond by:
- Being unable to keep up with the conversation (because of slower thinking speed)
- Having a hard time responding or describing a solution to a problem (because of planning and organization problems)
- Finding words to describe a specific need (because of word finding problems)
- Here are strategies to manage these difficulties:
- Ask for more time if you need it.
- “It takes me a minute to think these things through.”
- “I am not able to keep up, so I just need a minute to get my thoughts together.”
- It can sometimes help to write down questions or key points before an important conversation.
- Bring a list to healthcare appointments.
- Write down key points before talking about your needs with a partner.
- Talk through word-finding difficulties.
- Stopping a conversation because of a forgotten word can make frustration worse and make it harder to remember other words.
- Using a different word or rephrasing a sentence can get the point across without causing even more frustration.
- Your family can help you better if they understand what you are going through.
- Here are some tips to help your family:
- Encourage your family members to meet with your healthcare team to learn about your condition or disorder (i.e., knowing the name of the condition, the symptoms it causes, and how it affects you).
- Share the PainGuide website and program with your family so they can learn more about chronic pain.
- Work with your family as a team, rather than trying to take on too many responsibilities or keeping your feelings to yourself. .
- Let your family know that when you do feel well, you will do whatever you can to help.
- Also let your family know that you need to pace yourself so your symptoms don’t get worse. See the PainGuide Pacing section for tips.
Talk with your family about things other than your health, such as what is happening in their lives.
Members of your healthcare team have the important job of diagnosing your condition, giving you medical advice, helping you to manage symptoms, and offering you hope.
Here are some tips to help keep communication open.
- Make lists of your questions and symptoms
- Do this before your appointment.
- Include a description of how you think the treatment is going.
- Show your list to your provider if you are not sure what to go over first, and let them choose.
- Schedule regular appointments to talk about managing your symptoms, to address your concerns, and to track your progress.
- Do not wait until symptoms worsen.
- Instead, see your healthcare team on a regular basis.
- Take notes at appointments to help you understand and remember what you need to do.
- Ask questions and speak frankly with your healthcare provider so they are better able to help you.
- Explain how you feel physically, share your emotions, and give examples.
- Keep a medical folder of health papers, including those you take to office visits and papers you get from your healthcare provider.
- A medical folder is good to have in case you switch healthcare providers, travel, or want to have a medical history.
- Take charge and follow the plan your healthcare provider gives you. Call to report problems or if your condition gets worse or changes.
- Do not wait for problems to become too big before seeking medical help.
- Don’t worry that if you start to feel better, your healthcare provider will stop seeing you.
- Your treatment is a process, and your provider needs to know when you are having both bad and good days.
- Working together with your healthcare provider to get the best treatment possible.
- Respecting each other and meeting regularly can help your relationship.
- A care-partnership can be a complex relationship. The last sections gave suggestions for the person living with pain. Next, we have a few suggestions for care partners and caregivers.
- Ask for specific ways you can help. We said earlier in this section that a common “error” in communication about pain is describing what is wrong without asking the care partnerfor specific ways to help.
- This puts pressure on you, as the care-partner, to guess what is needed.
- We have suggested people living with pain be more specific when they ask for help.
- You can ask what help they would like.
- Make a plan for how you can help the other person without losing control of your own life.
- Share your feelings. You may learn that the other person worries about the same things as you.
- Take care of yourself. Being a care-partner to a person with pain is more of a marathon than a sprint.
- While it may feel selfish to take time for yourself, it will ultimately allow you to be a better caregiver and partner.
- Being a care partner does not mean you need to do everything.
- Part of your role can be helping the person with pain do what they can instead of doing things for them.
- From a place of helpfulness, care partners may jump in and do tasks for people with pain without consulting the person who has pain.
- In some cases, this help includes doing things that the person with pain can actually do or could learn to do if done differently.
- Try to strike a balance between providing help and providing support in the adjustment process.
- Talk about other things. Your relationship needs to be about more than just pain.
- If you dwell on the pain, it may actually cause the person's pain to worsen.
Being able to communicate about pain is important for our well-being.
- Communicating about pain is also very challenging.
- We hope that the information in this module gives you some ideas to improve your communication with others about your pain.
Your healthcare provider can give you a referral if you would like more help with communication or relationships. A psychologist, social worker, or counselor can help you to improve communication.
You can download, print, and use the PainGuide worksheets available here to support your self-care practices.
Use this worksheet to help you prepare for visits with your healthcare provider and get the most out of your visits. Please click on link above to go to the worksheet.