Developing Strategies and Finding Community: My Experience in Support Groups

Toward the end of the 12-week Family Connections course, a program offered by NAMI for people whose family members or loved ones live with borderline personality disorder (BPD), our instructor invited everyone to a monthly support group. I attended for years. My experience in a support group confirmed for me the benefits of peer support that has been established in research.

In my group, attendees practiced skills learned in the NAMI course — concepts themselves drawn from evidence-based therapy for BPD — under the guidance of the NAMI facilitator. In our sessions, we shared our struggles to understand our loved ones’ lived experiences and brainstormed suggestions for addressing the disconnect. This kind of dialogue and thinking out loud, I found, empowered attendees to become more effective in finding resources for their loved ones and navigating family relationships. This, I believe, was the heart of the meetings.

Learning Effective Communication

Group members worked on developing alternate ways to communicate with loved ones, with the goal of reducing tension and addressing conflict — all while repairing relationships. This skill is critical in maintaining relationships with people with BPD, because the condition is accompanied by difficulties with interpersonal relationships and the consequences of “emotional dysregulation.” In our group, we patiently coached one another on how to diplomatically craft a three- or four-sentence statement to address a problem at hand. For example, one attendee, with the help of fellow group members, developed a statement to establish and reinforce basic boundaries of co-residing with an adult with BPD.

Effective communication, we learned, also requires the mastery of a few concepts. One is “validation.” How do we maintain that delicate balance of being supportive and affirming a loved one without being inauthentic? Many family members, especially parents, often felt that they were being asked to accept unkind treatment or to pretend to agree with an idea or plan they objected to. They wondered: How do you, as a parent, validate your adolescent’s anger without actually agreeing that you are, indeed, “the worst mother ever?” How do you discuss any number of topics with your loved ones when they cannot be engaged without reacting in anger or extreme hurt?

Deepening Understanding of BPD

One issue that parents often found bewildering was how “anything” could provoke an argument. A woman with a background in health care described her daughter’s emotional sensitivity as akin to “burn patients who are so sensitive. I try to remember how painful it is for her being in her skin, how life is so hard for her.” Validation, we learned, does not mean agreeing with ideas or plans you don’t accept, or find counterproductive or inappropriate. Instead, validation entails relating to the person by going to the emotional basis of the idea or plan. For example, when a support group mother reacted with dismay at her daughter’s “plan” to drop out of high school and when a couple similarly reported discouragement at their son’s similar plan to leave college, fellow attendees guided them to consider the anxiety underlying their loved ones’ intentions.

Practicing Radical Acceptance

Another critical concept we practiced was “radical acceptance.” This required coming to terms with our loved ones’ mental illnesses so we could eventually help them navigate their struggles with work, school or relationships. We were reminded that our family members are not defined by their mental health conditions. We can offer support while respecting the person’s right to self-determination.

Reframing Our Mindsets

Another hurdle that attendees discussed was reframing their mindset, so as not to assign labels like “manipulative” to their loved ones. I once asked a couple if they felt manipulated by their daughter, who would interrupt a rare weekend out or even dinner out with a crisis. The couple said their leaving provokes a crisis of abandonment. They understand their daughter doesn’t know how to ask for what she needs.

Another parent of a child with abandonment wounds said, similarly, “Most of her needs or wants come from the standpoint that she’s not clear that she’ll ever get what she wants. She’s been abandoned so many times, and the pain from being adopted is so big that she feels she can only concentrate on what her needs are because she’s so afraid of them not getting met.” In these situations, we were encouraged to see our loved ones’ behaviors as stemming from trauma that produced anxiety and trust issues.

Our support group was managed by a skilled facilitator, whose wealth of knowledge and experience impressed and reassured attendees. When a group member was stuck in an unproductive approach or mindset, the facilitator intervened gently, unflinchingly helping the person see the limits of their approach and to gain new insights.

Creating a Community of Like-Minded People

Besides skilled facilitation, what makes support groups work? Attendees listen closely as receptive, nonjudgmental, understanding witnesses and supporters. People really consider each other’s challenges by asking follow-up questions about the problem at hand, the context and the options, and by making concerted efforts at analysis and problem-solving. As an educator myself, I marveled at the rapt attention and constructive work. There were no distracted attendees!

In this space, attendees can safely confer with one another over culturally, morally and emotionally harrowing decisions about ways they could or should help their loved one — or step back. One particularly painful matter causing great anguish among parents was whether to ask their young adult child to no longer live in the family home. This problem is of course exacerbated by the lack of safe, affordable low-cost housing.

After poring over an attendee’s concern, someone would eventually ask a question that seemed to come out of left field: “What do you need?” People whose loved ones live with a mental illness focus on the health care needs of their loved one, putting their own needs to the side. Yet of course, family members and others also need resources and support to recover — making this a meaningful question.

Of paramount importance, attendees understand where group members are coming from; they have been there. Attendees would shake their heads or laugh over friendly advice from well-intentioned people without much or any understanding of BPD, such as, “Have you tried setting limits?” One woman said her response to such suggestions was, “Bless you.” We chuckled over that.

What are the results? Attendees come to the support group because they are struggling with recurring acute crises and continual stress. Attending helps people gain some measure of calm, a sense of direction to take and renewed energy. It is worth noting that attendees also come when they are not in crisis because they want to give back.

The support group I attended had a novel quality. To my surprise, at nearly every meeting, we laughed over some farfetched situation or observation. Hearing one another’s stories, weighing different approaches, being reminded of self-care and comic relief — all of that is heartening.

Maureen O’Dougherty is a cultural anthropologist conducting research on the intersections of culture and mental health. Her current project investigates families’ experiences with borderline personality disorder. Maureen received her doctorate from the City University of New York. She is a faculty member at Metropolitan State University in St. Paul, Minn.