Elizabeth was in her late-twenties when she was diagnosed with schizophrenia. She worked to manage her symptoms, while also employed as a full-time nurse case manager and raising her two sons. It was a struggle to manage it all, and Elizabeth often wasn’t fully compliant with her treatments. For 17 years she cycled through periods of time when she was stabilized on medications, followed by episodes of breakthrough symptoms or relapse. She frequently visited hospitals for her episodes of breakthrough symptoms. As time went on and her hallucinations intensified, she would increase her medications, without consulting her doctor, to try to make the delusions go away.
“Even as a nurse, I still couldn’t tell what was wrong or why I was experiencing repeated episodes,” Elizabeth said. “I had to hit bottom before I could start rising back up.”
Repeated episodes are common in schizophrenia. In fact, one study showed adults living with schizophrenia had an average of 9 relapses in less than 6 years. Medication and supportive treatments can be a foundation of ongoing recovery for adults living with schizophrenia, and earlier treatment after diagnosis can lead to better outcomes.
For Elizabeth, finding the right treatment plan for her, including medication and supportive therapies, is what made the difference. Her schizophrenia treatment plan now includes a once-monthly injection, which can help manage her symptoms and help delay another episode. “After I was prescribed a once-monthly injection, I realized the medication was actually helping me and helped control my symptoms,” Elizabeth noted. “I could function with my children, be there for them, and raise my head when walking down the street.”
Despite stories like Elizabeth’s, it can take adults living with schizophrenia many years from their initial diagnosis to when they are prescribed a long-acting injectable medication. “For me, there was a stigma associated with injectable medications,” Elizabeth noted. “However, I soon realized that you don’t need to be in crisis or experiencing an episode of breakthrough symptoms to receive a once-monthly injection, that it could help me manage my schizophrenia symptoms.”
Advocacy organizations are working to help transform care for people living with serious mental illness. For example, the National Council for Behavioral Health recently issued final guidance that supports the use of long-acting injectable medications earlier in the treatment journey for adults diagnosed with schizophrenia. Elizabeth says a once-monthly injection helped her work towards her schizophrenia recovery goals and because of this, she wanted to share her story.
“You have to advocate for yourself,” Elizabeth said. “I want to give other people living with schizophrenia hope that they can achieve a better life for themselves. I believe in recovery, and in my recovery, my treatment is an important part of my plan.”
Elizabeth is now able to focus her efforts on reducing the stigma of mental illness and helping other adults who have been diagnosed with schizophrenia. She works in her local mental health clinic as a part-time kitchen manager and volunteers in its day program. Recently, Elizabeth was recognized as the Crisis Intervention Team (CIT) 2019 Consumer of the Year for her work helping to educate law enforcement about mental illness.
If you or a loved one are an adult living with schizophrenia, ask your doctor if a change in your treatment plan could make the difference for you. Learn more at www.oncemonthlydifference.com.
To see other stories from adults living with schizophrenia visit #ChangeSchizophreniaExpectations on The Mighty.
Elizabeth is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring.
Every story is unique. If you are an adult living with schizophrenia, talk to your doctor to figure out a treatment plan that’s right for you.