How to communicate and share your concerns

Talking about living with pain is quite difficult at times. Using the questions below may help you, your partner or your family to understand better how to manage the pain and have better times.

•   What is the hardest thing about living with chronic pain?

•   What do I/we do that makes it easier for you to manage your pain?

•   What do I/we do that makes it harder to manage your pain?

•   What can I/we do to help that we are not doing now?

You could write the answers, and any ideas that come up, in your notebook.

With practice, you can learn to tell your loved ones what will help you to manage your pain better. For instance, if those around you pay attention to your pain (perhaps by asking, ‘How is your neck?’), this can focus your thoughts on it more of the time. In fact, it can make the pain seem worse. People want to help, and don’t usually want others to suffer. This can sometimes lead to well-meaning concern and being over-protective.

It can help to ‘challenge your own negative thoughts’ or be aware of unhelpful thinking. Try this when you realize that you or the other person may be ‘mind reading’. If this causes difficulties, then challenge these negative thoughts. This may help improve your moods (see Chapter 14) and ability to communicate with others.

The following suggestions may help those around you to give you the right kind of support. Ask them to tick those suggestions they think they could try:

   Understand the difference between chronic and acute pain systems in the body.

   Encourage and support you to keep going on your pain management plan.

   Notice when you are trying to cope better.

   Remember not to ask you how the pain is (it makes you focus attention on it).

   Remind you of your day-to-day success in achieving your goals.

   Only offer help when you ask for it, or when you have agreed it is part of your pain management plan.

   Reward you or do something pleasurable when you are trying.

   Do problem-solving with you.

   Know that you are not doing further harm by getting active.

   Know that you are not exaggerating or being lazy when you take rest breaks and ‘pace’ yourself.

   Know that you can support, encourage and listen to them, even if you are in pain.

Try different suggestions and work out which ones are most helpful for you and others close to you. You can experiment several times with these suggestions or your own ideas. See what helps to improve relationships, and makes you feel more confident and supported. Experimenting also means discovering what does not help communication and relationships, which is valuable in itself. And remember to reward yourself and your partner and family when your efforts prove successful.

Part 2: chronic pain and sexual relationships

If you have a partner, being faced with so many challenges means that you need to be close and intimate, perhaps even more than before. Being in pain, or being afraid to cause the other person harm, can lead people to avoid physical intimacy. But in chronic pain conditions it’s important to realize that you can have a physical relationship that works for you as a couple.

This information on sexual relationships is aimed at heterosexual couples, but single people or gay couples may also find it useful. Organizations, such as Relate, will also provide reading materials, confidential help and advice on sexual and relationship issues (see Useful Information at the back of this book).