Two popular movies, A Beautiful Mind and The Soloist, brought the realities of schizophrenia to mainstream audiences. Although the two men portrayed in the movies were quite far apart in their life achievements–John Nash of A Beautiful Mind is a Nobel-prize winner and Nathaniel Ayers of The Soloist, a homeless street musician in LA–they both have the same disease that many people recognize as being a serious mental illness, but that few actually understand.
According to the National Alliance for Mental Illness (NAMI), schizophrenia affects 2.4 million Americans over the age of 18. For men, symptoms often show up during their late teens and early twenties; for women, symptoms often come a little later, in their late 20s and early 30s. There is not one solitary reason people develop schizophrenia: it is a combination of brain chemistry and structure, as well as environmental factors. Genetic studies have shown that in identical twins, the likelihood that both people will have schizophrenia is 50%, so there are obviously other factors besides heredity involved.
Given that schizophrenia often shows up in young adulthood, it is possible that your partner was not showing signs when you were early in your relationship, but you may be noticing symptoms that concern you now.
Schizophrenia is only diagnosed if there is a marked change in thinking, perceptions and behavior in the person. This change has to be observed for at least six months and is associated with the decline in the person’s ability to care for themselves or to function properly in a social setting. In addition, many other disorders, such as schizoaffective disorder, bipolar disorder, depression with psychosis, substance abuse, general medical conditions, and brain injuries need to be ruled out.
Early intervention is key: the disease generally has a gradual onset over the course of one-three years, and getting the right diagnosis early can prevent bigger problems down the line. The key symptoms to look for are “suspiciousness, unusual thoughts, changes in sensory experience (hearing, seeing, feeling, tasting or smelling things that others don’t experience), disorganized communication (difficulty getting to the point, rambling, illogical reasoning) and grandiosity (unrealistic ideas of abilities or talents),” according to Sandra De Silva, Ph.D, psychosocial treatment co-director and outreach director at the Staglin Music Festival Center for the Assessment and Prevention of Prodromal States (CAPPS) at UCLA, departments of psychology and psychiatry. If you have concerns, finding a qualified mental health professional is essential to begin the diagnostic process. There are also clinics around the world that assess patients for potential development of schizophrenia at the first sign of symptoms.
One of the biggest concerns for loved ones of people with schizophrenia is that the patient will not tell others that they are having symptoms, such as paranoia or hearing voices. Your partner may try to “manage” their distress through the use of alcohol, nicotine or street drugs. In addition, the risk of suicide by people with schizophrenia is high: about 10% of people diagnosed will commit suicide within 20 years of the diagnosis.
Conversely, sometimes people with schizophrenia do not believe they are ill, and therefore, are not treatment compliant. Lack of insight, or anosognosia, is a serious problem, especially when loved ones can clearly see the negative effects of the illness that might be managed with proper care on the part of the patient.
Advice for partners
Finding out your partner has schizophrenia will be a shock and tremendously impact your relationship. Schizophrenia can be well-managed and your partner may be able to live a life with meaning. However, your role has changed, and the first step is to create a network of support for yourself and your partner, such as through individual therapy for both you, support groups, online forums, and participating in NAMI’s Family-to-Family program, ideally with other family members who can provide respite support. If you need more encouragement to widen your support circle, it’s worth noting that 71% of caregivers who took part in a NAMI survey believe that the condition of the person they care for would improve if caregivers received respite care.
Educating yourself about schizophrenia is essential. This article can give you some insight into the world of someone with schizophrenia, and there are several recommended books and websites listed below as well.
As the primary caregiver, keep good records of who is on your partner’s treatment team, your partner’s medications and dosages, and note the context when any changes that occur in your partner’s behavior (time of day, location, what was happening just before the symptom began, etc). Having information available for mental health and medical professionals will assure that your partner receives the best care during a crisis. You should also consider creating a psychiatric advance directive with your partner so that their wishes are carried out if hospitalization is necessary.
Research what social services are available for your partner. Treatment will get expensive, and your partner will likely qualify for reduced-rate or free services. This guide to your partner’s legal rights will be useful, too.
Schizophrenia.com online forum for partners
The Brain in Schizophrenia (images)
NAMI Survey: Caregiver Experiences and Challenges