After more than 10 years of trial and error during which she was first diagnosed with Bipolar 2, Tina Collins found effective treatment and an accurate diagnosis for schizoaffective disorder, a condition the Mayo Clinic describes as a combination of schizophrenia symptoms such as hallucinations or delusion and mood disorder symptoms such as mania or depression.
Ten years may sound like a long time, but it’s not uncommon for the treatment process to move at a snail’s pace.
“On Pins & Needles: Caregivers of Adults With Mental Illness,” a study from The National Alliance for Caregiving, in partnership with Mental Health America and the National Alliance on Mental Illness (NAMI), provides some frightening data for people like Collins and their caregivers: Getting an accurate diagnosis is a battle for 4 in 10 caregivers. In one study, it took 11.8 years, on average, to find the right diagnosis.
After a decade of treatment and lifetime of struggling, Collins has found more than sanity. She’s found an abundant life.
What makes a difference?
- Mental health takes a village. According to NAMI, treatment for mental illness usually comes from more than one provider. “Most people treating a mental health condition have at least two separate professionals, one focusing on medication (the biological side) and the other focusing on emotional or behavioral therapies (the mind side).” Collins’ therapist Marcia Geser, LCSW, of Psych Associates of Maryland, LLC, adds, “A lot of people just go to a psychiatrist, get their meds and walk away and never get the support they need to feel supported or hopeful about the future or talk about and adjust the medication.”
- Get mental health professionals who believe in you or your loved one. “The individual therapy part mostly has to do with transference and counter transference.” Geser became a mother figure to Collins. “I was encouraging, consistent, reliable to her. The countertransference was that I liked her very much and think positively about her. It bolstered her a great deal to do more and more. Somebody saying, ‘You can do it. I know you can do it.’ It’s brainwashing in the other direction. If someone believes in you, you learn how to believe in yourself. The match sometimes works very well.”
- Make sure the health care providers you choose are experienced with your diagnosis. “I know a doctor who was just really good with prescribing the right medication for people with schizophrenia,” says Dr. Nicki Nance, a licensed mental health counselor who teaches human services and counseling at Beacon College. Nance once directed a program for felons with psychosis returning to mainstream society. “It’s complicated because some [medications] have terrible side effects. Patients don’t want to take them. You want an experienced doctor who can balance out right dosage. Sometimes doctors give drug holidays for special medications for particular weekends where you want better libido.”
- Assess how you or your loved one feels after sessions with the therapist, but don’t push too hard. “Ask yourself or your loved one, ‘How did it feel? How did it go? Is this a good fit?’” Geser says. “It could take up to 10 sessions to understand if there’s a fit. There’s no magic number.” While it’s okay to gently ask your loved one questions about the process, it’s not ok to badger them with questions such as What happened? What did they say? What did you say?
- If you don’t feel good about the mental health professional, move on. “Not everyone gets along,” Geser says. “You’re not obligated to see who you get matched up with. The therapist should say that. When people are depressed and demoralized, they don’t know they have lots of options.”
- An empowered patient questions. “Women tend to be pleasers and over-compliant so they would often accept without enough questioning what the doctor is saying,” Geser says. “Sometimes men are more assertive. Medical treatment is pretty much self-serve. You can’t depend on someone else to take charge of your treatment. It’s that way with the hospital, internists and treatment everywhere.”
- A family intervention plan helps. “The research tells us that with severe disorders families should be educated on how to help their person,” Nance says. “It should provide structure, help the family to monitor but not to be overbearing not to diminish the person’s dignity. If someone is getting ready to go home, have a meeting with family and the person and discuss the signs that people are going badly. Family intervention plans are so effective for mental disorders if you structure your time.” Nance adds that someone with severe mental illness should have a routine that has them sleeping and going to appointments at the same time, in the same order. “The therapy should be a structure within a structure.”
- Consider making group therapy part of the treatment plan. For Collins, who had lost many of her communication skills, group therapy was critical. “The group was the one thing that helped her the most,” Geser says. “The group was hand-picked. All of the members were high-functioning and highly verbal. There was a CPA, a professor and a social worker. She became more and more verbal. It gave her a social context that she could generalize out in the world.” In addition, sometimes family therapy may be needed. “The family system wants to stay static. Change in and of itself is extremely threatening, especially to someone who may have had role as caretaker and isn’t needed as much now.”
Maybe one of the most important takeaways? Make your life bigger than mental illness. “In general, don’t put the focus of your life about the worst place in it,” Nance says. “Get organized about great conversations or game night. You don’t want the whole functioning of the family to go down because one person has a mental illness.” Don’t underestimate the impact of quality time with caring loved ones in everyone’s healing process.
National Alliance on Mental Illness: www.nami.org
Mental Health America: www.mentalhealthamerica.net
On Pins & Needles: Caregivers of Adults With Mental Illness: www.caregiving.org/mentalhealth
Lauren Bittner is an award-winning freelance writer who focuses on women’s issues.
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