Communication Skills

People living with chronic pancreatitis (like all people!) live in a social environment. While your pain may be invisible to others, you continue to live and work in a world where you have relationships with other people. Talking about your pain with family, friends, and others can be hard for different reasons:

• Talking about pain can make the pain worse.
• Talking to people who do not understand what it is like to live with pain is hard.
• It's challenging to adjust to new roles, like being cared for by family or friends.
• People with pain sometimes have memory difficulties or difficulties organizing thoughts or coming up with the right words.

Relationships and support are central to living well with pain from chronic pancreatitis. Having good support can help your symptoms, mood, and sense of well-being.

The goal of this module is to share with you practical tools to help you improve your communication and feel more supported.

The following video will explain to you the importance of effective communication and will outline different communication styles.

It's not always easy to talk about your pain with someone with no pain.

• Most people have experimented with acute pain that lasts for days or weeks and can relate to it.
• However, chronic pain can be harder for others to understand and relate to.

Each person living with pain decides how much to share and with whom. For example:

• A person living with pain may want to share a lot of detail with a spouse, close family member, or best friend.
• Or might want to share less with a more distant relative or acquaintance.
• Or may not share much with somebody they barely know or an employer.

When talking about your pain with people who do not have pain, here are some points to consider:

• Who is my audience? It is important to consider the person's role, relationship, knowledge, and what they might do with the information you share.

• How much do I want to tell them? You do not have to share anything with anybody. Sometimes, like at work, it may be best to only share the information that relates to a specific need, such as accommodations. In other cases, however, it is important to share enough information to get the support you deserve. In the end, deciding how much to tell another person may be 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 might need 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 might want your spouse to know that being in pain is really scary for you and that you would like their support when feeling afraid. 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, even when we believe we are communicating our wishes clearly, we are not clear at all! Take this example:

  • One night, Lisa's pain and fatigue were especially high. She told her husband, "I'm not feeling well tonight."

  • Her husband responded by leaving her alone, so that she could rest quietly.

  • This caused Lisa to get upset because she felt her husband had abandoned 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 more effective for Lisa to be specific about what she needs from her husband. In addition to telling her husband how she feels, she might also ask him to do something specific. For example, she might 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.

Communication requires at least two people. It's easy to blame others for not understanding, but being a good communicator means expressing yourself in a way that others can understand. Communicating well is not as easy as it might seem.

Communication often breaks down when a person does the following:

• Does not listen to what is being said.
• Plans what to say next, instead of hearing what is being said.
• 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 one sounds like you?

• Aggressive communicators stand up for their rights at the expense of 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 often put the feelings of others 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.

Becoming an assertive communicator will help your family, friends, and healthcare providers understand what you are going through. Once they understand your needs better, they can help you more.

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 sidetracked.
• Be direct and concise 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 discuss.
• 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. Let others know they have been heard. This may help them to be more understanding of your concerns.
• Find ways to compromise instead of trying to 'win' in a conversation.
• 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 recognize that you were unclear in your request, let people know that you take some of the blame and that you want to help find an answer.
• Evaluate how your conversation went. Take time to think about how your conversation went so you know what to work on for next time.

Here is an example of miscommunication:

David, who has chronic pancreatitis, wakes up one day and recognizes that his pain is worse than usual. He knows that he will not be able to do all that he usually does so he says to his 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 allow the person with pain to rest. The spouse's response has come from a good place: she wants David to feel better, so she offered a solution and left David space and quiet so as to feel better.

What went wrong?

• The problem is that David was hoping for a different response. He wanted his spouse's encouragement and partnership. He also knows there are some things that need to get done for their family, and he was hoping his spouse will get them done. The response from the spouse did not help David feel better or help with getting the family things done.
• There is plenty of "blame" to go around in this scenario. David was not specific in his requests. Instead, he assumed his partner would know what he wanted and needed based on how he described his pain. The spouse, on the other hand, guessed – incorrectly! – what David 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 pessimistic. Rather, it reflects the reality that pain conditions are complex diseases and can be difficult to understand. Having this perspective also reminds the person living with pain that they cannot assume their partner is going to know what to do without some specific request. (This might 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 approach, however, opened the door to a misunderstanding. Although many people find it uncomfortable to ask for help, we know that a well-stated request is always better than implying what is needed.

For many, living with pain is a shared experience that includes spouses, family, and friends. It may affect your relationship, for example:

• At the beginning, the partnership might focus on providing emotional support to the person with pain as they adjust to living with the condition.
• As the condition progresses, there may be a shift in roles, particularly if the person living with pain can no longer do tasks they did previously.
• Further, progression of the condition may invite more challenges, such as the supporter needing to take on a caregiving role.
• These changes can impact relationship dynamics, or the way in which two people in a relationship interact with each other.

Maintaining an effective partnership can be challenging. For spouse care partnerships, it can be tough to balance the relationship you had before with the new focus on pain and care. If the need for caregiving grows, it's easy for everything to become about the pain, and the fun or loving parts of the relationship may fade into the background.

Here are suggestions to keep your relationships strong:

• When possible, separate "caregiving" and "non-caregiving" time. Try to separate "care time" and "normal time." It's okay to talk about your pain, but don't let it take over the relationship. While it is important to share the pain experience, it is also important to remember that the relationship was not built on pain. There are activities and experiences that brought you together; it is important to set aside time to continue with these shared interests.
• Redistribute roles. When a person living with pain cannot do a specific task done previously, the broader family system has to adjust to take on that task. While one option is to simply have somebody else take on the task, there is often the opportunity for a trade – perhaps the person living with pain can take on a task they did not previously do.
• Be creative. 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. When your partner asks how you are doing, do not pretend it does not hurt. Because your pain might change from day to day, let others (including healthcare providers) know how you really feel. * Ask for help when you need it. While it may be hard to ask for help, try asking in a way that makes it clear what you need help with.
• Accept help with kindness. When someone helps you or gives you a compliment, say thank you. Do not feel discouraged for needing help or an emotional boost.
• Discuss communication problems. If communication between you and a family member or friend becomes one-sided or tense, talk openly about it.
• Write down your feelings. If you're struggling to talk, writing your thoughts can help. Writing it down may give you time to calm down and practice how you would share your feelings before you actually talk about them.
• Talk about other things besides 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.

Remember, being in a care partnership means talking about how things are going and how to make them better. It is easy to fall into the trap of focusing only on the day-to-day needs, while the relationship itself drifts off course. Take time to check in on the relationship and discuss it with your partner.

For people living with chronic pancreatitis, pain can make it hard to communicate by:

• Changing the speed of thinking.
• Worsening the ability to plan and organize thoughts.
• Making it hard to find the right word.

Pain can make it hard to respond by:

• Making you unable to keep up with the conversation (because of slower thinking speed).
• Making it hard to respond or describe a solution to a problem (because of planning and organization problems).
• Making it difficult to find words to describe a specific need (because of word-finding problems).

The good news is there are simple strategies that can help. Here are a few tips:

1. Ask for more time. Most people with pain feel that they can participate in conversation if they're given a little extra time. If the person you are talking to speaks quickly, they may not realize you need more time. Try saying something like:

• "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."

2. Use paper and pencil to organize your thoughts. If you are going to have an important conversation – about a challenge, or with a physician, or about your finances – consider writing down the key points ahead of time. This helps you stay organized and helps you cover all the points you would like to cover.

3. Talk through word-finding difficulties. Not being able to come up with a word is very frustrating. However, we also know that stopping a conversation because of a forgotten word can increase frustration and make it more likely that more words will be forgotten. 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 consider:

• Encourage your family to meet with your healthcare provider to learn about your condition and get their questions answered.
• Share the website with your family so that they can learn more about chronic pain.
• Work with your family to keep your home life as positive as possible, including planning meals together, managing dietary restrictions, and adjusting routines to accommodate symptom flare-ups or fatigue.
• Let your family know that when you feel well, you will do whatever you can to help but that you must also pace yourself so your symptoms don't get worse. See the Pacing module for more information.
• Talk with your family about things other than your own health. Show an interest in what is going on in their lives as well. It's important to remember that your identity is more than your condition. Sharing joys, jokes, or even daily routines can help maintain closeness and shift the focus away from illness.

Your healthcare provider's important job is to diagnose your condition, give you medical advice, treat your symptoms, and offer hope. Your job is to allow your healthcare team to help you manage your pain condition. You can do this by keeping the lines of communication open by:

• Making lists of your questions and symptoms before office visits. Write down your thoughts about how treatment is going.
• Scheduling regular appointments to talk about managing your symptoms, to address your concerns, and to track your progress. This can be a more helpful way to manage your symptoms instead of making appointments only when symptoms worsen. If you are unsure about what to go over first, show your list to your healthcare provider and let them choose the most important items.
• Taking notes at office visits to make sure you understand and remember what you need to do. This may be a big help if your memory and thinking problems are making it hard to remember things.
• Asking questions and being honest with your healthcare provider so that he or she will be 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 those 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. If you have problems, or your condition worsens or changes, call to report it. 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 an on-going process, and he or she 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.

As detailed throughout this section, a care partnership can be a complicated relationship. Just as we have suggested specific strategies for the person living with pain, we have a few to suggest for the care partner or family and friends as well:

1. Ask for specific ways to help. We highlighted earlier in this section that a common "error" in communication about pain is the tendency to describe what is wrong without asking for a specific type of 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 in asking for help. You can help with this by asking what help they would like if they do not bring it up themselves.
2. Make a plan for how you can help the other person without losing control of your own life.
3. Share your feelings. You may learn that the other person has the same concerns you do.
4. Take care of yourself. Being a care partner to a person with pain is more of a marathon than a sprint. While it may be tempting to give yourself over completely to the person with pain, particularly if you care deeply about them, 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.
5. Being a care partner does not mean you need to do everything; rather, 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.
6. 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 a skill that is important to our well-being. Yet it is also one of the greatest challenges. We hope that the information provided in this module gives you some ideas of how you can improve your communication with others about your pain.

If you would like more help with working on communication and relationships, ask your primary care provider, specialist physician, or other trusted provider for a referral to a psychologist, social worker, or counselor.