There are a number of local and national support groups and organisations which provide support for people living with chronic pain. Some are for specific conditions while others are for all types of chronic pain. For more information about organisations see the ‘Resources‘ section of this site.
Many of the people that we talked to had joined a support group. Some people’s GPs or consultants had advised them about a local group or one specific to their condition. Others found out about groups from the local radio, an NHS pain management programme or clinic, or by looking online or in a local telephone directory.
A woman with Fibromyalgia described how her consultant gave her a website address and through that she found the Fibromyalgia Association, which had been a good source of information and support. One man recalls how he had heard about a new pain support group in his area on the radio. Initially he was unsure whether it was for him but when he went along he was relieved to find that he was not the only person with pain.
Her consultant gave her an internet address and through that she found the Fibromyalgia Association.
Went along to a support group after hearing about it on the radio. Was relieved to discover other…
The internet was a popular source of support as well as information (see also ‘Finding information‘). It also brought support to people in their own homes through e-mail, chat lines and forums. Although this type of support was generally seen as good, some people warned against getting dragged into other people’s problems or receiving incorrect advice.
She mainly accessed support groups on internet for information and did not want to dwell on the…
Finds internet support networks good but stresses that you have to be careful what advice you…
People who had joined a support group often felt that the greatest benefit was the mutual understanding of what it is like to live with chronic pain.
Talks about how other people in support groups know what you are going through because they also…
Despite this, people were keen to emphasise that it was not all about complaining and groups often involved a lot of laughter. A woman emphasised the importance for people’s’ partners of meeting and sharing experiences of living with somebody with pain. Others appreciated being able to pick up the phone and talk to somebody who understood what it is like to have a bad day with pain.
Advises people and their partners to join a support group to meet other people with pain.
Support groups and organisations were also good for learning about different ways of coping with pain. Some had regular speakers, features on coping with pain or information about online resources. A few also had special courses on living with chronic pain.
Several people we talked to had become involved with pain related organisations as group facilitators, local telephone contacts or in setting up support groups or national charities, and a few people were in paid employment for pain charities.
This type of work was often seen as therapeutic and helped people to make something positive out of their experiences. One woman described how her involvement as a local contact for the charity Back Care has been a good thing that has come out of her pain problem.
Says becoming a local representative for the charity Back Care has been a positive thing to come…
Some people thought that they weren’t a ‘support group type of person’, but were happy and surprised to find out that other members had had similar experiences to them.
Recalls finding mainly women at the support group but eventually talked to others and found that…
Others do not want to join a support group either because they felt they had a supportive network of friends and family or because they didn’t want to dwell on their problems. Some felt that at this time they didn’t need support but might do in the future.
Getting to a support group was a problem for a few people either because they did not have transport or because they were working and the times were not convenient. One woman suggested that support group meeting at lunchtime might be better.