It is perhaps not surprising that friendships sometimes become difficult to keep up or simply end. However, many people considered themselves very lucky to have good friends who had shown great kindness and support.
It can be hard for friends to know how to behave with someone with chronic pain – should they ask about the pain? Some people noted that over time friends stopped asking how they were, or that people asked, ‘How are you?’ without seeming interested in the answer.
Some said they hated being asked about their pain, while others were happy to talk about it with some friends but enjoyed ‘normal’ conversations with others. One woman suggested that it would be better if people asked whether you wanted to talk about the pain. Others felt it was important, at least initially, to try to explain to friends how the pain affected their life.
Doesn’t mind that some friends ask about her pain and others don’t because it is nice not to talk…
Feels that friends should ask her whether she wants to talk about the pain rather than avoiding…
People valued friends who were able to pick up when the person was in pain without having to ask, perhaps by noticing a facial expression, or a particular posture. They were also prepared to be flexible about plans, perhaps by arranging social evenings at home, realising that favours might not always be returned, and being willing to take regular rest breaks when out and about.
It also meant being tolerant when the pain was bad and accepting last minute cancellations (see also ‘Social life and special occasions‘). One woman’s friends were happy for her to make herself comfortable when she visited and were always offering to help. Another explained that her friends knew she needed to stop regularly when they were out shopping.
Explains that her friends are very accommodating when she visits and are always offering to help.
Friendships could sometimes feel one-sided, although some people said they had become better listeners. One pointed out that because she was at home in the day she could help by waiting in for deliveries, or making phone calls or internet enquiries for her housemate.
Pain can dominate people’s thoughts and many were aware that it was potentially boring or depressing for others to hear about, or as one man put it ‘the most negative thing you can do’. They made a conscious decision not to talk about it and sometimes described putting on a mask or veneer with all but a few close friends and family.
Some felt it was more appropriate to talk to people who could understand their pain, perhaps a professional, or people they met through support groups or on the Internet (see also ‘Support groups‘).
Making new friends was sometimes difficult as it meant telling their story and explaining their limitations. However one woman felt that, in some ways, it was easier because new friends accepted her for what she was, not what she used to be. A few people commented that greeting people could be awkward because they found shaking hands or hugging painful.
Finds it painful to shake hands which inhibits her with people she doesn’t know very well.
People said they frequently came across negative attitudes from strangers and sometimes from friends. Because pain is invisible and variable some commented on the stigma of being thought to be a ‘malingerer’, faking it, or getting funny looks or comments when using a disabled parking space.
Sometimes he suspects that people think he is a phoney when he gets into his car in a disabled…
People could be laid up in bed one week and the next week could be seen exercising or gardening. This sometimes raised suspicions and unkind remarks about whether they ‘really had pain’. One man said he could well understand this because before his back pain started, he had been sceptical about ex-colleagues who had ‘conveniently’ gone off work with back pain shortly before retirement. Needless to say, his perspective had changed radically.
Many felt that the biggest problem was that they looked perfectly normal and often healthy. Women sometimes felt that just because they put their make up on people assumed they were fine. Similarly, men commented that people equate looking strong with being fine.
Feels that when she puts her make up on she looks healthy and people don’t appreciate that she…
One man’s daughter had suggested that he needed ‘P’ for pain painted on his forehead. People with multiple sclerosis (MS) and myalgic encephalomyelitis (ME), which are not usually associated with pain, and a woman with depression, felt that people did not always believe them.
Feels that chronic pain is a hidden disability and recalls his daughter saying he needed a ‘P…
It was suggested that although the general public understands acute pain, such as a broken limb that gets better, chronic pain is poorly understood. Many felt that it was difficult to comprehend chronic pain unless you’d experienced it yourself but suggested that there was a need for more public awareness. Some were involved in campaigns to promote awareness of chronic pain.