Communication Skills

Pain can be hard to explain to others. Each person experiences pain differently.

• Pain can be different in intensity, impact, and symptoms for different people.
• Most people can relate to acute pain that only lasts for a couple days or weeks, but chronic pain is harder to understand and relate to.

Deciding what and how much to share with others about pain is a personal decision, based on who is listening.

• 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.

• It is tempting to assume that misunderstandings are because of the other person.
• To be a good communicator, we need to use words that help the listener understand our 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.

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.
• Assertive communicators are effective because they share their own needs.
  • They show respect for themselves and others and can compromise.
  • They speak directly, act confidently, and maintain good eye contact while communicating.
  • Assertive communication gives you the best chance of being understood.

Using an assertive communication style will help your family, friends, and healthcare team understand what you are going through. Once they understand your needs better, they can help you.

A few simple but important ideas may help you communicate well:

• Think about what you want to say before you say it.
• Stay on subject, not getting side trackedsidetracked.
• 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.
• Listen well, and try to avoid talking over other people.
  • Think of it like a tennis match: conversation goes back and forth, instead of just one person talking
• Acknowledge other people's feelings.
  • Lets them know that they have been heard.
  • This may help them to be more understanding 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.
• Share your emotions.
  • Share how you feel about someone's behavior.
  • Try not to make broad statements.
• 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.
  • This helps you know what to work on for next time.

Miscommunicating needs – 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 say 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 offered a solution and left the person with pain space and quiet so as to 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 a person who does not have pain, 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 is going to 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 opened the door to a misunderstanding.
  • 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.
• Early stages of a pain condition: more focus is on emotional support to the person with pain.
• Roles may change over time, especially if the person living with pain can not do things they used to be able to do.
• More challenges may come up, like the supporter becoming a caregiver.
  • These changes can change 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, and have the care partner or another person in the family do that task.
• 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. 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.
  • Everyone needs an emotional boost sometimes.
• 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.
  • Seeing it in print can help with how you feel.
  • Writing it down gives you time to calm down and practice before sharing your feelings.
• Talk about things other than your pain. Your relationships shouldn't center on your pain.
  • Talk about other things that are going on in the world and in the rest of your lives.
• 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).
• Because of these problems, using strategies to manage these difficulties is important:
  • 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 to keep your life at home as positive as possible.
  • 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.
    • Show them that you are interested in 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. Your job is to help your healthcare team to help you manage your pain.

Here are some tips to help keep communication open.

• Make lists of your questions and symptoms.
  • Do this before your appointment to help you get ready for the appointment.
  • Describe how you think the treatment is going.
• 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.
  • Show your list to your provider if you are not sure what to go over first, and let them choose.
• Taking notes at appointments can help you understand and remember what you need to do.
  • Taking notes may be a big help if your memory and thinking problems make it hard to remember things.
• Ask questions and being frank with your healthcare provider so they are better able to help you.
  • Explain how you feel physically, share your emotions, and give examples.
• Keeping 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.
• Taking charge and following the plan your healthcare provider gives you. Call to report problems or if your condition gets worse or changes.
  • Do not wait for a problem to become too big before seeking medical help.
• Not worrying 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 section gave suggestions for the person living with pain. Next, we have a few suggestions for the care-partner or family and friends:

• 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 for how someone can 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 help with this by asking 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.
  • It may be tempting to give yourself over completely to the person with pain, especially if you care deeply about them, but it is important to take care of yourself, too.
  • 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.
  • Out of a place of helpfulness, care-partners are often eager to jump in and do tasks for people with 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.
  • If that is the case, then doing the task for them may unintentionally add to their disability.
  • Therefore, it is important to strike a balance, where you provide help when needed, but provide support in the adjustment process for other tasks.
• 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.