By Dawn Brown, director of the National Alliance for Mental Illness Helplines, speaking to Danny Bonvissuto
My son Matthew has a rare condition, he was diagnosed when he was 8 years old. Most commonly, schizophrenia appears in the teens or early twenties.
At 18, he suffered a nervous breakdown that required hospitalization. Eventually he found an effective treatment, but it took a long time.
Once we found something that seemed to address his symptoms on multiple levels, he became eligible for treatment, meaning he was taking his medication as planned. But medication is only a small part of the treatment plan. He also keeps his appointments with his psychiatrist and therapist and does what he can to maintain his overall health.
He is now 38 years old. He enjoys his life. He has friends. He goes to places during the day to stay connected with others. But it’s a journey.
The hardest part is when someone first starts experiencing symptoms. This is rock. There will be a lot of ups and downs. It does get better over time. An attentive, informed loved one is often the best indicator of outcome for a person with schizophrenia.
“Perfect storm”
Often, when people begin to experience symptoms, or when they suffer from the full-blown psychosis associated with schizophrenia, they resist treatment. It’s a perfect storm. Young people are starting to fall into place, they are experiencing symptoms, people are throwing labels around, and they are resistant to serious mental health conditions.
This is a very difficult situation for a parent or caregiver. They are 18 years old and can decide whether to go to the hospital or take medication. As a parent, you lose the power to let them do these things.
Listen and empathize
When it comes to getting someone into treatment, we recommend that families listen.Not just heard; listen What is their experience. Their reality is different than most people’s reality. If what they’re saying is delusional, I’m not going to say you should agree with what they’re saying. But you can relate.
If they think someone is out to get them, you can say, “That sounds scary. You must be worried.”
This is their reality. Imagine this is true. This is what your loved ones believe.
Then listen for anything that might prompt them to seek treatment. Many people with schizophrenia have difficulty sleeping. Treatment will help them improve their sleep cycles.
Maybe they want to go back to college. You can say, “I know you really want to go back to college, and this is what I expect from you. Let’s see what you can do to get back there.”
Work with them to achieve their goals—not what you want, but what they want.
Ideally, after you’ve listened and empathized, you can get them to agree to some therapy. That’s when you become what I call a recovery partner, working with your loved one to find solutions and help.
First, treatment is trial and error
Many people stop treatment because, let’s be honest, medications for schizophrenia don’t always work. It can have terrible side effects that make people lose hope, so they stop.
One side effect is obesity. If you have a young woman who is told she needs to take this drug and she gains 30 pounds in 3 months, she wants to stop taking it. The sound stopped. But within a week or two, the sounds return and the cycle starts over again.
It is common to try different medications at the beginning of treatment. So does my son. He tried four or five antipsychotic drugs, which targeted the more active part of schizophrenia—the hallucinations. But when he discovers one that works, it’s like a light switch turns on in his brain.
Matthew suffers from obesity and other unpleasant side effects. But he also realized he needed medication and that the side effects were not as severe as the psychosis itself. It’s a very mature place.
I offer hope for people to keep looking and not settle. Always work with a psychiatrist. Have people with schizophrenia sign a Health Insurance Portability and Accountability Act (HIPAA) consent form so that the psychiatrist can work with other mental health professionals. Over time, if you are persistent in pursuing treatment options, you are likely to find something that works.
Explain what medicines do
People with schizophrenia should be fully informed and aware of anything they put into their bodies. Part of their involvement in treatment is understanding the pros and cons of any type of medication and how you want it to affect them.
positive reinforcement
Once the medication takes effect and symptoms subside, you can have a conversation about it. “Remember last month when you heard noises and couldn’t sleep? Remember how scary and scary that was? Now that the medication is working, that’s a good thing. It’s a very important step.
This is positive reinforcement. You can engage with them on an intellectual level and understand what they are doing and what results they are seeing. They can think about cause and effect: I like the effect, so I’ll keep doing it.
If that doesn’t work, get a taper treatment
Stopping treatment for schizophrenia suddenly is never a good thing. If they are unhappy with the side effects, or if the medication is not working, stress the importance of working with a psychiatrist.
These are powerful drugs that alter the chemical balance of the brain. You may need to gradually reduce the amount of one drug and add another to your regimen so that your blood levels are adequate. You want to avoid going to extremes, and you don’t want to be completely eliminated.
Listen respectfully to why they should stop and look for alternatives. There are many combinations of options. It takes patience with the process to find what works. They don’t work immediately: it takes a few weeks. Talk about what would be the least disruptive to their lives.
