Bipolar Disorder
Role of a Support Group in Treatment of Bipolar Disorder
Transformative impact of peer support, understanding and acceptance
Posted April 24, 2016
The first posting of this blog (2/1/10) addressed the importance of a support group in the treatment of individuals with bipolar disorder. I'm now returning to the topic, as I think it's an important one that doesn't receive enough attention. I’ve also found through my years of working with individuals diagnosed with bipolar disorder that the combination of a support group and individual therapy is an ideal combination of treatment modalities. I’d like to explain why.
Most with bipolar disorder experience some degree of stigma due to societal misunderstanding of the disorder. People with bipolar disorder are often perceived as crazy, moody, and unstable. The picture of the disorder conveyed through the media is often one that highlights the more extreme or acute aspects of mood instability. We don’t often hear media stories about people with bipolar illness who are productive and doing relatively well.
Beyond these issues of stigma, people with bipolar disorder find that others simply don’t understand what they’re going through. They might say, “Oh, I understand how you feel” or “I know what you’re going through.” But the truth is that unless they themselves have bipolar disorder or have had a close connection with someone who does, they often don’t know what the bipolar individual is experiencing. Not many do.
The support group environment is one of the few settings where people living with bipolar disorder can truly feel understood and accepted. There’s no need to make excuses or to apologize. They don’t need to dance around the reality of what’s going on. Someone can come to group one night and say… “About a week ago the bottom suddenly dropped out and I’ve been feeling like crap ever since,” and the other group members absolutely know what’s being conveyed.
A group member can express she hates to take her medication and is frustrated with her husband’s recurrent response of “It’s important for your stability and you should really stick with it.” In group, she receives agreement from a member who says, “Yeah, I hate my meds too.” Another member chimes in, “I wish I could stop all my meds and just let my mind do what it wants to do.”
The need to hide part of one’s identity that’s socially unacceptable is absolutely not present in group. In fact, rather than feeling like the outsider who doesn’t belong, group members get to feel like they really do belong. It’s the neurotypicals (people without psychiatric diagnoses) that have no place in the group. And the good news here is that the feeling of acceptance and belonging can have a long half-life. It can carry over into the real world and soften the extent to which the individual feels marginalized.
I distinctly recall am college student who early on in treatment said – “I could never disclose my illness to anyone outside my immediate family.” After a year in group, she was comfortable sharing the reality of her disorder with most of her close friends. She wasn’t quite the open book, which isn’t a recommended strategy for most with bipolar disorder. But she no longer felt that she was living with a shameful secret that needed to be hidden. In fact, the more she could freely share her bipolar reality with those she knew well, the more comfortable she became openly being her bipolar self and relying upon the support of friendship when appropriate.
The experience of talking with others who have managed the same struggles that the bipolar individual is faced with can also provide hope and important educational guidance. This is especially the case when some group members are further along with their illness. Their encouragement and advice actually carries more weight and validity than the same messages conveyed by mental health professionals. After all, they’ve lived it.
When a bipolar support group is well structured with sufficient attention given to the importance of homogeneity (member’s having enough in common), then it can become a potent elixir with strong therapeutic potential. It won’t cure bipolar disorder, but it can provide enough healthy connection to increase the quality of one’s life. And if that can be achieved, that’s big.
Some comments about homogeneity: Group cohesion comes about more rapidly when members perceive they have enough in common with others in the group. It is easier for a college student to relate to other students than it is for the student to relate to group members in their mid-40’s who are well into their careers and adult identities.
Another aspect of homogeneity entails the acuity of one’s disorder and the extent of functional difficulties that the disorder brings to the individual’s life. Imagine two people, both age 32 and diagnosed with bipolar I. One has had two hospitalizations over the last five years and she’s close to completing her master’s degree in education. The second has had four hospitalizations over the last five years. He’s not been able to complete college, is unable to maintain employment and is on social security disability. These two people are very different even though they share the same diagnosis. Each will derive more benefit from a support group experience if they are able to be with people (who share a fair amount of common ground.
Despite the multiple benefits of group, it’s still not sufficient as a stand-alone therapeutic approach, at least not in the early stages of treatment. There’s a lot more to bipolar treatment than peer understanding, support and advice. The ideal combination entails individual psychotherapy and psychiatry with the support group as an adjunctive approach. Let’s look at how a support group optimally interfaces with individual psychotherapy
Typically when I commence psychotherapy with a new patient with bipolar disorder, the optimal frequency for the individual therapy is once weekly. Sometimes, if mood symptoms are strong and the patient is in a mild degree of crisis, twice-weekly sessions may be preferable during the early stages of therapy. Whether or not the individual is referred to group at the outset of treatment entirely reflects his or her openness to it. Some, as with the student I mentioned, are too uncomfortable with the diagnosis to participate in a group. The prospect feels frightening because it involves a group identity (those with bipolar disorder) that the individual is not yet ready to accept. But if the individual is open to the group option it can also greatly facilitate the early treatment phase. Essentially the individual can more rapidly observe that the diagnosis isn’t a prison sentence and that others have found ways of coping with the disorder’s impact upon their lives. Conversely, in the absence of group involvement, the newly diagnosed is more vulnerable to the Influence of his or her fears about what lies ahead, which can easily become a slippery slope towards doom and gloom.
The frequency of individual therapy can begin to lessen as the patient gradually feels more accepting of the diagnosis and more adept at managing his or her bipolar symptoms. However, given the chronicity of the disorder there’s still the question: Since the illness is chronic, how long does one need to remain in psychotherapy? The answer lies in the needs of the person seeking psychotherapy.
If prior to the onset of bipolar symptoms an individual were functioning well, relationships were good and he or she were relatively productive in day-to-day living, then psychotherapy could mostly focus upon adjustment to the diagnosis and bipolar symptom management. This doesn't take forever. Approximately six months of weekly psychotherapy is a reasonable dose to begin with.
On the other hand, if individuals are faced with unremitting mood symptoms… If they struggle with other coexisting diagnoses (anxiety, substance abuse, ADHD, trauma, etc.) or complex interpersonal issues that are more personality-based, then weekly sessions may be needed well beyond six months. The good news is that I find this not to be the norm. It’s more often the case that following an initial period of weekly therapy most patients are able to back off to every other week, once monthly, or intermittent sessions as needed. The patient’s involvement in an every other week group can facilitate reduction of session frequency without loss of continuity.
Even when individual therapy no longer feels necessary, a patient’s continued membership in group allows the therapist to monitor what’s unfolding and to intervene with a return to some individual work. Essentially the connection with the therapist remains in place.
Now at this point I wish I could simply say – Support groups are very advantageous. Go find one and do what’s needed to become involved.
Unfortunately, across the US, the kinds of professionally led support groups I’m referring to are not abundant or even not offered at all. This represents a large gap in the services available for those with bipolar disorder. It also isn’t so surprising. Most clinicians in private practice don’t have enough of a concentration of bipolar patients to support the membership of an ongoing support group. This becomes even more relevant if you’re living in a low population density environment.
So what’s to be done? Or more specifically, how can individuals with bipolar disorder begin to exert some influence and bring about some change?
First, I suggest you speak with your therapist and directly inquire about group options. If the provider is not aware of any, you might ask what kinds of local resources (outpatient clinics, university-based clinical training sites, county mental health centers, etc.) exist that could potentially create a bipolar support group. If you don’t get any leads with these kinds of inquiries, then you might ask if your provider would be willing raise the issue with the broader network of regional colleagues he or she is connected with. Just because any one provider doesn’t have sufficient bipolar patients to organize a group, it doesn’t mean that a larger network of providers wouldn’t have sufficient patients to refer to a group. The issue then becomes one of finding a therapist interested and willing to doing some advocacy work while also identifying a qualified professional who has the knowledge base to conduct such a group.
There’s also the potential role of non-profit organizations whose work entails advocacy for individuals with mental health difficulties. NAMI (National Alliance for the Mentally Ill) is the largest one that comes to mind, though you’ll also find there are many others including organizations with advocacy roles very specific to your geographic location. Guide Star is an on-line source of information about non-profits across the US. The search engine located on their home page can be tailored to gather information about bipolar or mental health organizations in your geographic region.
My only caution here is the lack of homogeneity you may encounter if you attend a non-profit sponsored open bipolar support group. When I use the term “open” it’s meant to imply that it’s open to anyone. If that’s the case you may want to speak with the person who typically leads the group in order to get a sense of the group’s composition and whether it might be a good fit for you. If you’re still not sure after an initial conversation with the group leader, you can always give it a try and then decide if it’s something you want to continue.
If I had a magic wand, I’d have most individuals with bipolar disorder become involved in a support group as one their ongoing treatment modalities. I know that self-disclosure about personal issues isn’t everyone’s cup of tea. But I recommend that you at least give it some consideration… perhaps even a couple of session trial runs. And if you don’t have access to any groups in your area, that’s unfortunate and it’s also not unchangeable.
My hope is that over the next decade we’ll see many more treatment options available for people living with bipolar disorder. The illness is still emerging from many years of being misunderstood and inadequately treated. Gradually, bit by bit, I’d like to think we can all contribute to a healthier response to the bipolar need.
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Russ Federman, Ph.D., ABPP is in private practice in Charlottesville, VA (www.RussFederman.com). He is co-author of Facing Bipolar: The Young Adult’s Guide to Dealing with Bipolar Disorder (New Harbinger Publications).