Supporting a loved one with mental illness presents many challenges. But one of them isn’t blame. It’s important for families “to learn that they didn’t cause [their loved one’s disorder] and they can’t cure it,” according to Harriet Lefley, Ph.D, professor at the Department of Psychiatry & Behavioral Sciences at the University of Miami Miller School of Medicine who’s worked with families for 25 years.
Still, how you treat your loved one has a big impact on their well-being. “But their behaviors can exacerbate the symptoms,” she said. In fact, Dr. Lefley cited a large amount of literature on expressed emotion that found that patients of families who expressed hostility and criticism toward their loved one (e.g., believing the patient was lazy) or were emotionally overinvolved (e.g., “I’d give my left arm if he’d get well”) were more likely to relapse.
Below, Lefley and Barry Jacobs, PsyD, director of behavioral sciences at the Crozer-Keystone Family Medicine Residency Program, Springfield, PA and author of The Emotional Survival Guide for Caregivers, offer their tips for effective support.
1. Educate yourself about the illness.
Educating yourself about your loved one’s illness is really the foundation of support. Research also has shown that education works. According to Lefley, a huge body of evidence has shown that if you provide families with education and involve them in the treatment process, patients experience a reduction in symptoms, hospitalization days and relapse. Plus, the family environment is generally improved, she said.
Not knowing how the illness functions can create misconceptions and prevent families from giving their loved ones effective help. For instance, without education, it’s hard for people to grasp and appreciate the severity of the symptoms, such as the terrifying thoughts associated with schizophrenia or the suicidal ideation associated with a deep depression, Lefley said. It’s not uncommon for families to wonder why their loved ones just can’t snap out of it.
Families must “understand that the [individual’s] thoughts and actions are not under their control,” Dr. Jacobs said. Any antagonistic or bizarre behaviors are a manifestation of the illness, not willful, purposeful actions.
Similarly, in families, there is “a tendency to personalize a loved one’s symptoms and behaviors,” Jacobs said. However, these behaviors “are not meant to cause friction in the family,” Lefley said.
2. Seek out resources.
One helpful way to educate yourself about a loved one’s illness and how you can help is by turning to reputable publications. Lefley recommended the following books as excellent resources.
- The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life by Kim T. Mueser and Susan Gingerich
- Surviving Schizophrenia: A Manual for Families, Patients and Providers by E. Fuller Torrey
- Schizophrenia for Dummies by Jerome Levine and Irene S. Levine
- The Bipolar Survival Guide: What You and Your Family Need to Know by David J. Miklowitz
You also can learn more about all psychological disorders here.
3. Have realistic expectations.
Your expectations can impact your loved one’s recovery, too. According to Lefley, the following (with different variations) is an all-too-common case:
A loved one spends several weeks in the hospital. When they’re out, the family assumes that the hospital stay has cured them. The individual wants to make up for lost time at school, so they ramp up their class schedule by taking extra courses. By doing so, their stress level escalates and they end up having a relapse. In this case, the best option is to have lower expectations and encourage a loved one to set a slower pace since added stressors can exacerbate symptoms. Families may not realize that “every time the person has a psychotic episode, more and more neurological damage” occurs, Lefley said.
But setting reasonable expectations can be tricky, as Jacobs pointed out, because “we aren’t talking about a static illness.” Families are trying to “adjust their expectations to a moving target,” so the challenge is to “fine-tune those expectations all the time given the trajectory of the illness,” which he said may change “week to week, day to day or even hour to hour.”
Sometimes, you may be using pure trial and error, Jacobs said. But using your own experience can be helpful. “Ultimately you’ll know a whole lot more than any professional will,” he said, so it’s important to have realistic expectations and to encourage your loved one to have them, too.
4. Reach out for support.
Stigma can prevent families from seeking support. But it’s through support that you can gain more strength and valuable knowledge. Support groups also help to “normalize [a family’s] experiences and better enable them to swap ideas about managing a loved one with mental illness,” Jacobs said.
The National Alliance on Mental Illness (NAMI) is a great resource in helping to support families and educate them on mental illness. For instance, NAMI offers a free 12-week course called the Family-to-Family Education Program, and most areas have local support groups. Mental Health America (MHA) also offers a variety of programs and resources.
5. Work closely with your loved one’s treatment team.
While it depends on the specific system, confidentiality barriers and HIPAA laws can complicate working with your loved one’s treatment team. But this is a challenge you can overcome. In fact, Lefley tells families that “it’s worth it to make a pest of yourself.”
First ask to speak to your loved one’s social worker and the psychiatrist, if possible, she said. Let them know that you’d like to be part of the treatment team. “Many facilities will allow families into the meetings and case conferences,” she said. But ultimately, families should ask to be included and “expect it.”
Ask how you can help your loved one, and “find out what’s a reasonable expectation for recovery and how functional will [your loved one] be,” Jacobs said.