Schizophrenia affects as many as 1 in 100 Americans over their lifetime and is twice as common as HIV/AIDS. Yet few other diseases are shrouded in quite as much misinformation, lack of information, and secrecy as schizophrenia is. On average, it takes more than eight years between the time symptoms first appear and the time a person is diagnosed and treated for the disorder. Pervasive stigma keeps most people in the dark until the disorder becomes up close and personal. As a result, when someone you love is diagnosed with schizophrenia — a no-fault, equal-opportunity brain disorder — you’re not sure where to turn or who to tell. Initially, most people feel ashamed, bewildered, and alone.
During our careers working in various research, policy, and clinical roles at federal, state, and local levels, people with schizophrenia and their loved ones often asked us questions. We always tried to provide simple, straightforward answers, but we never have enough time to present the big picture — to answer their questions in a larger, more understandable context.
So we decided to write this topic. This topic distills what we’ve learned and read over our combined 85+ years in the field of mental health — and just as important, the valuable lessons we’ve been taught by patients and families during that time. In these pages, we give you immediate access to tools and information that otherwise might take you a much longer time to acquire.
We strongly believe that only through improved public awareness and enhanced mental-health literacy can society reverse the stigma and discrimination that stands in the way of finding cures and helping people with schizophrenia lead the full lives they deserve.
How This Topic Is Organized
We’ve divided this topic into five parts. Here’s what you’ll find in each.
Part I: Understanding Schizophrenia
In this part, we give you a broad overview of schizophrenia, separating what’s real from the myths and misperceptions. We describe the symptoms and unusual (and sometime disturbing) behaviors commonly associated with the disorder and explain how clinicians distinguish the symptoms of schizophrenia from those of other serious mental disorders. We describe the onset of the disorder, which can come on suddenly, seemingly out of the blue, or may make its appearance so gradually that it’s barely noticed.
Part II: Finding Out What’s Wrong and Getting Help
Getting a diagnosis is the first step in getting help. In this part, we explain how the diagnosis of schizophrenia is made and identify the different types of schizophrenia. We also give you tips on how to assemble a healthcare team for diagnosis and treatment, and what to do if things don’t seem to be functioning as smoothly as you would hope them to. Finally, we provide advice on starting treatment, including navigating the financial hurdles you’ll likely face in paying for care and dealing with your loved one’s potential lack of insight into the illness.
Part III: Treating Schizophrenia
Antipsychotic medications are the cornerstone of treatment for schizophrenia. This part explains how psychiatrists select a first medication, and how and why they make adjustments. We also provide advice about how your loved one can cope with common side effects and offer tips for encouraging your loved one to stick to her medication schedule. We explain the range of treatments for schizophrenia and fill you in on what’s known and unknown about complementary and alternative treatments. Finally, we identify new and promising directions in research and explain the benefits and risks of participating in clinical trials.
Part IV: Living with Schizophrenia
Schizophrenia presents challenges not only to the individual with the illness, but also to the people around them. Families need to stay positive and optimistic, and avoid blaming each other for the illness. In this part, we tell you how families can avoid burnout, work collaboratively with professionals, and acquire the coping skills they need in order to handle their loved one’s not-so-pleasant behaviors. This part also provides suggestions for finding decent affordable housing and for learning how to handle psychiatric crises to minimize their adverse impact. Finally, we define and explain the importance of recovery and meeting the needs of the whole person, which transcend treatment alone.
Part V: The Last Part
Every topic in the series includes a part called The Part of Tens, which offers helpful hints to empower readers. In Schizophrenia, we debunk ten myths about mental illness, offer up ten tips for coping with your loved one’s disorder, and ten ways your loved one can avoid relapse.
