By Dawn Brown, Director of the National Alliance on Mental Illness HelpLine Services, as told to Danny Bonvissuto
My son, Matthew, was rare in that he was diagnosed when he was 8 years old. Most often, schizophrenia manifests in the late teens or early 20s.
At 18, he had a psychotic break and required hospitalization. Eventually he found treatment that was effective, but it took quite a while.
Once we found something that seemed to address his symptoms on several levels, he became treatment-compliant, which means he’s taking his medication on schedule. But medication is a small part of the treatment plan. He’s also keeping his appointments with his psychiatrist and therapist and doing what he can to maintain his overall health and wellness.
He’s 38 now. He enjoys his life. He has friends. He has places he goes during the day that keeps him engaged with others. But it’s been a journey.
The most difficult part is when someone first begins to experience symptoms. It’s rocky. There will be many ups and downs. Over time it does get better. An engaged, informed loved one is often the best indicator of the outcome for a person with schizophrenia.
‘The Perfect Storm’
Very often when people begin to have symptoms, or when they have full-blown psychosis related to schizophrenia, they resist treatment. It’s the perfect storm. You have young adults coming into their own, they’re experiencing symptoms, people are throwing around labels, and they’re resistant to having a serious mental health condition.
For a parent or caregiver, this is a very difficult situation. They’re adults at 18 and can make decisions about going to the hospital or taking medication. As a parent, you lose the power to make them do these things.
Listen and Empathize
In terms of getting someone to engage in treatment, we advise family members to listen. Don’t just hear, but listen to what their experience is. Their reality is different than most people’s reality. I wouldn’t say you should agree with what they say if it’s delusional. But you can empathize.
If they think someone’s out to get them, you can say, “That sounds very scary. You must be very worried.”
That’s their reality. Imagine that it were true. That’s what your loved one believes.
Then listen for anything that might motivate them to get treatment. Many people with schizophrenia have trouble sleeping. Treatment will help them with their sleep cycles.
Maybe they want to get back to college. You can say, “I know you’d really love to go back to college, and that’s what I want for you, too. 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 get them to agree to some therapy. At that point you become what I call a recovery partner, working with your loved one to find solutions and help.
At First, Treatment Is Trial and Error
A lot of people stop treatment because honestly, the medication available for schizophrenia isn’t always effective. It can have horrible side effects and people lose hope, so they stop.
One of the side effects is obesity. If you have a young woman who’s being told she needs to take this medication and she gains 30 pounds in 3 months, she wants to stop. The voices have stopped. But within a week or two the voices are back and the cycle starts all over again.
It’s common to try different medications at the beginning of treatment. That was true of my son as well. He tried four or five antipsychotics that targeted the more active part of schizophrenia — the hallucinations. But when he found one that worked, it was almost like a light switch turned on in his brain.
Matthew has obesity and some other unpleasant side effects. But he also has the awareness that he needs the medication and that the side effects aren’t as bad as the psychosis itself. That’s a very mature place to be.
I offer people hope to keep looking and don’t settle. Always work in conjunction with a psychiatrist. And get the person with schizophrenia to sign Health Insurance Portability and Accountability Act (HIPAA) consent so the psychiatrist can work with other mental health professionals. It’s very likely that, over time, if you’re persistent in seeking treatment options, you’ll find something that works.
Explain What The Medications Do
People with schizophrenia should be fully aware and informed about anything they put in their bodies. Part of them being a participant in their treatment is understanding the pros and cons of any type of medication and how you hope it will affect them.
Once the medication has become effective and the symptoms have receded, you can have a conversation about it. “Remember last month when you were hearing voices and couldn’t sleep? Remember how scary and awful that was? Now that the medications are working, it’s a good thing. A really important step.”
It’s positive reinforcement. You’re reaching them on an intellectual level about what they’re doing and what results they’re seeing. They can think through cause and effect: I like the effect, so I’m going to keep doing this.
Taper Treatment if It’s Not Working
It’s never a good thing to abruptly stop treatment for schizophrenia. If they’re unhappy with their side effects, or if the medication isn’t effective, impress the importance of working with their psychiatrist.
These are powerful medications that change the chemical balance in their brain. You might have to taper down one medication and work another into the regimen so your blood levels are sufficient. You want to avoid extremes, and don’t want to be completely knocked out.
Respectfully listen to why they want to stop and look for alternatives. There are a lot of combinations of options out there. It takes patience with the process to find the ones that work. They don’t work immediately: It takes a couple of weeks. Talk about what will be least disruptive to their life.