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

1. 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.
2. 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. In other cases, however, it is important to share so that you get the support you deserve. In the end, deciding how much to tell another person may be best decided based on the next item:
3. 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. 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. If you know what you want the listener to get from the conversation, then you can focus your conversation to be about those specific needs which helps the listener get the point you want to make.
4. 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?"

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

To improve as a communicator, it helps to understand the style of communication you tend to use. There are three common communication styles. Which do you use most?

1. 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.
2. 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.
3. 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.

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

• 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. If you recognize that you were unclear in your request, let people know that you take some of the blame for the problem 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

Miscommunicating needs – a sample scenario

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 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 they benefit from their spouse's encouragement and partnership. They also know there are some specific tasks that need to be completed for their family and they are hoping their spouse will help get them done. The response from the spouse has accomplished none of this.

There is plenty of "blame" to go around in this scenario. The person with pain was not specific in their requests. 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:

1. 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!)
2. 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.

Navigating relationships with family, friends and caregivers

For many, living with pain is a shared experience that includes spouses, family and friends.

In the early stages of a pain condition, 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 by having the supporter take on a caregiver 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 difficult to maintain the balance between the longstanding relationship and the pain-focused relationship. If caregiving needs increase, it can be easy for relationships to become particularly pain-focused, with the non-pain related elements of the relationship drifting into the background. Here are suggestions that may be useful in maintaining balance in relationships:

1. When possible, separate "caregiving" and "non-caregiving" time. One of the challenges of care-partnerships is the blending together of the pain-focused and non-pain-focused relationships. While we believe 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.
2. Redistribute roles. Living with pain requires adjustment – not just for the person living with pain, but for the family system. 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.
3. Be creative.While pain can prevent a person from doing a task they previously did, it is more commonly the case that pain prevents the person from doing the task the way they used to do it. While subtle, this is a really important difference, because it may mean that the person can still do the task, just in a different way. Part of the partnership can include working together to find new or different ways to approach tasks that cannot be done as they were done before.
4. Be frank about your pain. When partners ask how you are doing, do not pretend it does not hurt. Because your pain can fluctuate, let others (including healthcare providers), know how you really feel.
5. 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.
6. Be a cheerful receiver. When someone helps you or gives you a compliment, say thank you. Do not feel discouraged that you needed the help or an emotional boost.
7. Discuss communication problems. If communication between you and a family member or friend becomes one-sided or tense, talk openly about it.
8. Write down your hardest communication problems. It may help to see in print what you are feeling. Writing it down may give you time to calm down and practice how you would share your feelings before you actually talk about them.
9. 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 discussing how it is going and how it could be made 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 some people living with pain, cognitive difficulties can further complicate communication in relationships. Cognitive changes can impact areas that are important in conversation, such as your speed of thinking, ability to plan and organize, and ability to find the word you are looking for. Frustrating challenges in relationships can include keeping up in conversation (due to change in thinking speed), clearly conveying a thought or solution to a problem (due to difficulty with planning and organizing), or finding the words to describe a specific need (due to word-finding difficulty). It is very important for people living with pain to learn strategies to manage these difficulties.

Examples include:

1. Ask for more time. 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 togethe")
2. Use paper and pencil to organize your thoughts. 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.
3. Talk through word-finding difficulties. 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.

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 the PainGuide 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. See the PainGuide * Pacing* section for tips.
• Talking with your family about things other than you own health. Show an interest in what is going on in their lives as well.

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 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 frank 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 need 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.

Tips for partners and caregivers

As detailed throughout this section, a care-partnership can be a complicated relationship. Just as we have suggested specific strategies to 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.