I am currently involved in conducting a study in which chronic pain patients keep a diary of their daily events, whom they’re with and how they feel. Before beginning the study they must come to an Orientation session. It has been very tiring running what seems to be an endless stream of these sessions but the opportunity to meet and talk to such a wide range of people of chronic pain patients, many of whom have suffered with their pain for many years, has been extremely inspirational. Their individual experiences differ, of course, but one thing that many of them identified as most troubling was that they felt totally alone in their pain. One woman told me that when she exerted extra effort to manage her pain, others around her thought that she wasn’t experiencing pain and so they withdrew their concern, offered less help. In a way stoicism is punished — the more they attempted to cope, the less support they received!
Pain is intensely private — perhaps the most private and subjective of all health ailments. There is no blood test or x-ray or any other objective measure that will identify people in pain or indicate how much pain their in or how much they’re suffering. Now, of course, one thing that you can do is to educate family and friends about your pain and to remind them that your efforts at management do not mean the pain has been eliminated. But it is apparent to me that people who have not experienced something themselves cannot never truly understand it. And that’s why there’s no substitute for networking with others who know what it’s like, who understand, who can commiserate, who can offer valuable information and practical advice. Local support groups can be useful but online support sites offer many advantages including groups with very specific types of certain conditions (local groups may not have enough people, but the Internet is open to the world), access to support and help at any time, and is more friendly to people who are shy and introverted.
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