Healthy Support For Those Living With Chronic Illness
The Need for Support
People living with chronic health challenges rarely receive the type of emotional and psychological support they need. They need to feel seen and appreciated, and both are hard to achieve when one is no longer well enough to do the types of activities for which people are normally appreciated. Without ongoing support, self-efficacy, mastery, and other skills associated with improved health outcomes are difficult to develop and maintain.
The Need for Understanding
Friends and family, and health care providers too, often feel frustrated because they want to help, yet all too often, nothing seems to help. Behind their frustration is the fact that they usually have not learned how to listen to the ill person without treating him or her with either pity or sympathy; neither is what the person needs. I believe that no one except a fellow traveler on the path is truly capable of understanding what life is like for the chronically ill. There is a sense of isolation that is damaging to health and state of mind.
Support Groups, Victimhood, and Empathy
Through attending and facilitating numerous support groups for people with chronic as well as life-threatening medical conditions over the years, I came to the conclusion that identification with one’s diagnosis or symptoms is their greatest source of unnecessary suffering.
But I reached another, initially surprising, conclusion as well: I came to understand that many support groups actually exacerbate the problem, inadvertently supporting the suffering itself rather than the path out of suffering.
In some illness-based support groups, members talk about their suffering while the rest of the group offers either advice or sympathy. Most often, compassion, empathy, and understanding are far more valuable than advice.
Most of us find it very validating to share our troubles and receive empathy and understanding. The need to be seen, heard, and understood is what drives us to talk about our struggles, but it has a dark side: without incorporating skill-building techniques, support groups can devolve into an orgy of victimhood. Much of what goes on in many of these groups is a festival of complaints: about pain, fatigue, malaise, disability, and limitation of life activities, a kind of self-pity party.
The activity of sharing our complaints with the group serves to bolster our identification with and attachment to the very things about which we feel compelled to complain. And it increases our identification with and attachment to being a member of a group of sick and helpless patients.
“Patient” is an important term to use intentionally. I use it to refer to someone who passively receives a medical or complementary treatment. When used to describe people in psychotherapy or any form of skill-building group, the word “patient” can be disempowering because it implies passive receipt of a treatment that actually requires conscious effort and participation.
What is a Healthy Support Group?
Support groups are healthy when the facilitator guides participants in how to empathize with each other’s feelings rather than with the facts about their situations. Another feature of a healthy support group is that it incorporates skill building into every session. The lives of the group members improve when there is a focus on building self-efficacy and mastery, leading to a sense that we can make a difference in our lives and in the lives around us through our actions.
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