Introduction
People living with pain (like all people!) live in a social environment. While pain may exist within you, you continue to live and work in a world where you have relationships with other people.
For many people living with pain, talking about pain with family, friends, colleagues, clinicians, and others can be a challenge or even an activity that makes pain worse. For some, the challenge is in how to talk with others about pain, particularly when the other person may not really understand what it is like to live with pain. For others, the challenge may be associated with adjusting to new roles where family or friends are acting as caregivers. Other challenges may be associated with communication itself. Pain is often associated with memory difficulties or difficulties organizing thoughts or coming up with the right words for your message.
Relationships and support are central to living well with pain. They can impact your symptoms, mood, and sense of well-being. The goal of this module is to share ideas for how to have the best communication with those who share in your pain experience.
Talking about your pain with people who do not have pain
As anybody living with pain knows, it can be difficult to explain your pain to others. Pain is experienced differently for each person, and can vary in its severity, impact, and related symptoms. While most people can relate to brief acute pain, most people do not have a framework for understanding what chronic pain is like.
Each person living with pain has a different level of comfort with what they want to share. And, for many, how much they want to share may change based on who is listening. For example, a person living with pain may want to share a lot of detail with a spouse, close family member or best friend; they might want to share only a modest amount of information with a more distant relative or acquaintance; and they might want to share relatively little 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? It is important to realize that you do not have to share anything with anybody. In fact, in some scenarios, such as employment, it may be best to only share the information that relates to a specific need, such as accommodations.
- When this conversation is over, what do I want the other person to know? We encourage people with pain to think about the end of the conversation first, spending some time thinking about what pieces of information they would like the listener to take away.
- When this conversation is over, what do I want the other person to do? In your communications it is often helpful to think about what you want to ask for and be sure to say your request clearly and directly.
Avoiding common pitfalls
Communication, by definition, requires at least two people. When communication fails, it is tempting to assume that: "I communicate well, it's the other person's fault for not understanding". Actually, to be a good communicator, the communicator needs to craft his/her message so that the intended receiver can understand it.
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
How do you Communicate?
To improve as a communicator, it helps to understand the style of communication you tend to use. There are three common communication styles:
- Aggressive communicators stand up for their rights at the expense of others. Such people often speak loudly, act superior, and may 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, may be secretly angry and stressed.
- Assertive communicators are effective because they share their own needs. They show respect for themselves and others and make good use of compromise. They speak directly, act confidently, and maintain good eye contact while communicating. Assertive communication gives you the best chance of delivering your message successfully.
By becoming an assertive communicator, you stand a better chance of having your family members, friends, and healthcare providers understand what you are going through and how they can help.
Tips for Assertive Communication
- Prepare ahead of time what you want to say before you say it
- Stay on subject, and 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, which lets them know they have been heard and may help them to be more understanding of your concerns
- Find ways to compromise. It might be hard sometimes to agree with other people, but if you can see a way to compromise, suggest it
- Be specific. Try to focus on what someone actually says or does in a certain instance, rather than making vague or broad accusations
- Share your emotions. Share how you feel about someone's behavior. Try not to make broad statements
- Clearly tell people what you want them to do next time. Try to be specific and realistic
- Evaluate how your conversation went. Take time to think about how your conversation went so you know what to work on for next time
Miscommunication Example
A person living with pain wakes up one day and recognizes that his/her pain is worse than usual. S/he knows that s/he will not be able to do all that s/he usually does so s/he says to his/her 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: s/he wants the person with pain to feel better, so s/he offered a solution and left the person with pain space and quiet. Yet the person with pain is left feeling unsatisfied. S/he feels that s/he told the spouse about the pain and the spouse did not seem to care.
What could have been done differently? The answer may lie within the person with pain who, while they told their spouse they were having pain, never asked for what they wanted.
What was really wanted? Did they want help with household tasks? Did they want comfort and closeness with their spouse? Did they want the spouse to leave them alone so they could rest? Perhaps the person with pain wanted all of these things at different times of the day!
Lesson: When communicating about pain, be specific about what you need. Instead of just saying "I am having a bad pain day," try "I am having a bad pain day. Can you sit with me for a while?" or "I am having a bad pain day. Can you help with the dishes today?"
Organizing Thoughts to Communicate Effectively
Most people with pain feel that they can participate in conversation the way they would like as long as they have enough time. If the other person in the conversation does not need extra time, they may not recognize that they need to slow down. Therefore, it is important to ask for more time if you need it. This can include making a statement about needing more time ("It takes me a minute to think these things through") or might require a more specific request ("I am not able to keep up, so just need a minute to get my thoughts together").
If you are entering into an important conversation – about a challenge, or with a physician, or about your finances – consider writing down the key points ahead of time. This can help with organization and can give you a reference to make sure you have covered all of the points you would like to cover.
Not being able to come up with a word is very frustrating. However, we also know that stopping conversation because of a forgotten word can increase frustration and make it more likely that more words will be forgotten. Therefore, it can be helpful to try to talk around forgotten words, rather than stop the conversation to find them. It might mean using a different word or using multiple words to describe the word that is missing.
Communication with Family
If you help your family understand and accept your condition or disorder, they may be better able to support you. Some things you can do include:
- Helping your family to learn more about your condition or disorder – its diagnosis, symptoms, and effects on you. Encourage them to meet with your healthcare provider to get their questions answered.
- Share this program so that your family members can learn more about chronic pain
- Working with your family to keep your home life as positive as possible
- Letting 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
- Talking with your family about things other than your own health. Show an interest in what is going on in their lives as well.
Communication with Healthcare Providers
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 him or her to help you manage your pain condition. You can do this by keeping the lines of communication open:
- 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.
- Taking notes at office visits to make sure you understand and remember what you need to do.
- Asking questions and being frank with your healthcare provider so that he or she will be better able to help you.
- Keeping a medical folder of health papers, including those you take to office visits and those you get from your healthcare provider.
- 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.
- Working together with your healthcare provider to get the best treatment possible. Respecting each other and meeting regularly can help your relationship.
Tips for Partners and Caregivers
- Ask for specific ways to help. A common "error" in communication about pain is the tendency to describe what is wrong without asking for a specific type of help. You can help 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 has the same concerns you do.
- 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.
- Help them do what they can. Out of helpfulness, care-partners are often eager to jump in and do tasks. But doing things that the person with pain can actually do may unintentionally add to their disability. Strike a balance.
- 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.
Conclusion
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.