Despite significant progress toward normalizing mental health and reducing the stigma associated with its diagnosis and treatment, most of this change has occurred in wealthy urban areas. Attitudes about mental health in rural America and communities outside the mainstream have been slower to change and retain some resistance to discussing mental conditions and mental health openly, without judgment.
Such a strong taboo on the subject of mental health means that conversations and education around baseline care and non-critical check-ups are also much less common. In other words, if talking about it can be avoided, it is avoided. As with physical health, lack of preventative care and education worsens health outcomes, and care and diagnoses are only finally pursued when the situation has deteriorated enough that it is no longer avoidable.
As a consequence of this pattern, getting any form of mental health diagnosis means one of two things: either the person and their support system are relatively forward-thinking and willing to seek mental health care without being under duress, or the person’s condition has worsened to the point where it has become sufficiently disruptive to demand attention.
In the latter cases, unlearning enough stigma to make room to learn new mental health care techniques and information is often a long process of trial and error, as learning to live with, or care for, a significantly disruptive mental health condition is a complicated journey. In cases where more than one such condition is diagnosed, this is even more true.
As with physical health, diagnoses are often the most important step in the process of achieving better health outcomes, and so families and loved ones supporting someone with co-occurring diagnoses have a solid point from which to start the process at the very least. Recently, the National Federation of Families livestreamed a panel of speakers with lived and professional experience, “Supporting Family Members with Co-Occurring Diagnoses,” during which Dr. Mark Thomsen elaborated on factors that complicate or alleviate the burden of the mental health journey.
“My role is a psychiatrist,” said Thomsen. “I focus on a lot of co-occurring conditions, but schizophrenia and bipolar are the areas I focus on the most, and I’ll tell you, both from my own story and my work, the family support that’s there is oftentimes one of the biggest contributors to a person succeeding in recovery and moving forward. I’ve seen that in both a short span of time in a hospital setting, or in patients I can think of that I’ve had for years and years.”
Even at the point of hospitalization, when most people might assume that a person’s support network had surely acknowledged and accepted their mental health conditions, a family’s willingness—or lack thereof—to embrace their loved one and their conditions head-on and without reservation remains one of the most important variable factors in the outcome of that person’s health.
In other words, not only is family acceptance and support a critical necessity for positive mental health outcomes, it is also inconsistent enough to merit remarking. No pediatrician says that oxygen is important for children’s health, for example, because oxygen is not in short supply. Family support for people with mental health conditions requiring treatment, however, especially co-occurring conditions, has no such guarantee.
Muriel Jones, mother of a son with an autism spectrum disorder and schizophrenia, shared her own journey of acceptance. When her son was diagnosed with ASD nearly two decades ago, she was unprepared. “I did not know anything about autism. I was not aware of autism. The only thing I knew was that a few years before, there was the movie Rain Man. That’s all I knew about, and I kept saying, ‘That’s not my son.’ But actually, it was my son.”
After her son stopped talking at a very young age, Jones took the initiative to enroll him in a study program that later led to his diagnosis. “From there, my response had to be, first of all, to become aware, to become educated. And that was the most difficult thing, because I was in denial.” His later diagnosis of schizophrenia was similarly delayed by the side effects of stigma. “It took a while before I found out that it runs on my mother’s side of the family, in the males,” said Jones. “That was something I wish I had known earlier. He would not have been experiencing all these different medications.”
Few families speak openly about the conditions and mental health problems their members face, and even fewer in some cultures and more rural areas, and that taboo-induced lack of information can directly contribute to delayed diagnoses and prolonged periods of unnecessary struggle with medications and techniques that can contribute more side effects than benefits for the person and their family.
Family support programs, which educate and guide families on their journeys to helping their loved ones live with or heal from various mental conditions or mental health problems, can provide the most crucial type of support—reassurance. For Rachael Craig-Dunn, family support programs entirely shifted her trajectory as a mother trying to care for a son who was self-medicating undiagnosed conditions with substance use. “I got the position as a family support partner and it changed my life,” said Craig-Dunn. “I think that family support is amazing. We provide emotional support to parents, family members, and caregivers.”
By meeting each family at their own point in their journey, family support programs can more effectively educate and prepare families to help and care for their loved ones—and often to care for themselves, as well.
While family peer support programs help to undo the damage of stigma on a family-by-family basis, widespread use of these programs may also help on a broader community level by increasing overall comfort and confidence in discussing topics of mental wellness. With enough work counteracting long-standing taboos, more people will feel comfortable treating and improving their mental health just as they do their physical wellness, and health outcomes overall will improve.
To learn more about family peer support, find resources for yourself or your loved ones, or get involved in advocacy, visit the National Federation of Families at https://www.ffcmh.org/.
