Each year, about 100,000 youth and young adults experience psychosis for the first time. They might see or hear things that aren’t there. They may believe things that aren’t true. It’s like “having a nightmare while you’re awake,” describes Elyn Saks, a legal scholar and mental health-policy advocate.
Unfortunately, when someone starts having these frightening experiences, doctors and medical professionals often tell them that their life won’t ever be the same. That they may never get better. That the best-case scenario is a sub-par existence where every goal they have is limited by their mental state.
Saks, for example, was diagnosed with schizophrenia as a young woman after multiple visits to a psychiatric hospital. “My doctors gave me a prognosis of ‘grave.’ That is, at best, I was expected to live in a boarding house and work at menial jobs.”
This narrative is not only exaggerated, but it’s also inaccurate. It’s akin to telling someone who recently went into diabetic shock that their life is pretty much over. Having diabetes does require proper treatment and lifestyle adjustments. It isn’t an easy health condition—nor is any illness—but you can still live a productive life. The same goes for psychosis and the mental health conditions it accompanies.
There are two categories of recovery for mental health conditions that involve psychosis: clinical recovery, which refers to decreasing/eliminating symptoms and the time spent in the hospital, and personal recovery, which is “a unique process rather an end point with key recovery themes including hope, rebuilding self and rebuilding life.” This form of recovery involves personal goals and values that make life fulfilling.
Personal recovery has received more attention in recent research to help combat the myth that you can’t lead a good, fulfilling life with psychosis. Even if a person hasn’t achieved a complete clinical recovery (yet), they can still work towards personal recovery. According to a 2017 study, “We should make efforts to scientifically characterize the conceptual framework of personal recovery, so that users, family members, caregivers, and professionals can understand and contribute to the users’ personal recovery and subjective well-being.”
Clinical recovery takes time. And during that time, life shouldn’t be on hold. While a person is in treatment, they can still work towards theirs goals and do things that make them feel fulfilled. That way, once they leave a treatment program or a hospital visit, they have a foundation to continue building the life they want.
Setting Goals Leads to Better Outcomes
Clinical recovery and personal recovery work together and complement each other. According to NIMH’s research project, Recovery After Initial Schizophrenia Episode, it is essential for people experiencing psychosis to have personal goals that drive their treatment. For example, getting a degree for the career they want or getting involved with a specific cause. Working towards clinical recovery is incredibly hard, and having aspirations for the future helps individuals stay motivated and engaged in their recovery process.
This is why giving someone a “grave prognosis” can be harmful and counter-intuitive: Because people experiencing psychosis have better outcomes when they are focused on achieving future aspirations. That’s hard to do when you’re feeling hopeless about your future.
“Fortunately, I did not actually enact that grave prognosis” states Saks, who refused to accept that the psychosis associated with schizophrenia would define her life. “Instead, I’m a chair professor of law, psychology and psychiatry at the USC Gold School of Law; I have many close friends; and I have a beloved husband.” Saks isn’t an exception to the rule. In fact, many medical experts today believe there is potential for all individuals to recover from psychosis, to some extent.
Experiencing psychosis may feel like a nightmare, but being told your life is over after having your first episode is just as scary. Both personal recovery and clinical recovery are possible—that’s the message we should be spreading to the thousands of young people experiencing episodes of psychosis.
Laura Greenstein is communications manager at NAMI.
Note: This blog was originally published in March 2018.
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