The Journey of Schizophrenia: A Story of Hope and Resilience
By Dawn Brown, Director of Helpline Services at the National Alliance on Mental Illness, as told to Danny Bonvissuto
The Early Struggles
When Dawn Brown’s son, Matthew, was diagnosed with schizophrenia at the tender age of 8, it was a bewildering and challenging moment for their family. Schizophrenia typically manifests in late teens or early 20s, making Matthew’s case quite rare.
At 18, Matthew experienced a psychotic break that led to his hospitalization. It was a tumultuous period, with multiple treatment attempts before finding an effective solution. Medication, while crucial, was just one piece of the puzzle. Regular sessions with psychiatrists and therapists, along with a focus on overall health and wellness, were equally important.
After years of dedication and perseverance, Matthew, now 38, has found stability and happiness in his life. He has built a network of friends, engages in social activities, and thrives in his daily routines. The journey, however, was far from easy.
The Role of Loved Ones
One of the most critical aspects of managing schizophrenia is the support and guidance provided by loved ones. An informed and engaged family member can significantly impact the outcome for an individual struggling with the condition.
The Perfect Storm
It is often observed that individuals experiencing symptoms of schizophrenia resist treatment, creating what Dawn refers to as the “perfect storm.” The onset of psychosis, the reluctance to acknowledge a mental health condition, and the challenges of decision-making as an adult make the situation incredibly complex for both the individual and their caregivers.
For parents like Dawn, navigating the fine line between support and autonomy for their adult child can be an arduous journey. It requires patience, understanding, and a delicate balance of empowerment and oversight.
Listen and Empathize
Listening to the lived experiences of individuals with schizophrenia is crucial in initiating treatment and fostering a sense of understanding. Empathy, though not always agreement, plays a pivotal role in establishing a connection and paving the way for collaborative solutions.
By acknowledging the individual’s reality, validating their emotions, and exploring avenues for shared decision-making, loved ones can bridge the gap between perception and treatment.
Expanding Perspectives: Navigating Schizophrenia Treatment
Addressing Medication Challenges
One of the significant hurdles in schizophrenia treatment lies in the complexities of medication. Many individuals discontinue treatment due to ineffective or intolerable side effects, leading to a cycle of relapse and remission.
Exploring different antipsychotic medications, targeting specific symptoms like hallucinations, is often a trial-and-error process. For individuals like Matthew, finding the right medication can be transformative, illuminating a path towards stability and well-being.
Embracing Hope and Persistence
Despite the challenges posed by medication, Dawn emphasizes the importance of perseverance and collaboration. Working closely with psychiatrists, exploring various treatment options, and maintaining open communication can lead to breakthroughs in managing schizophrenia.
Encouraging individuals to remain proactive in their treatment journey, advocating for holistic care approaches, and fostering a sense of hope can bolster resilience and empower individuals to navigate the complexities of schizophrenia.
**Summary:**
Dawn Brown, Director of Helpline Services at the National Alliance on Mental Illness, shares her son Matthew’s journey with schizophrenia, highlighting the challenges, triumphs, and pivotal role of family support. The narrative sheds light on the complexities of schizophrenia treatment, emphasizing the importance of empathy, collaboration, and perseverance in managing the condition effectively. Through a blend of personal anecdotes and expert insights, the story provides a beacon of hope for individuals and families navigating the intricate landscape of schizophrenia.
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By Dawn Brown, Director of Helpline Services at the National Alliance on Mental Illness, as told to Danny Bonvissuto
My son, Matthew, was strange because he was diagnosed when he was 8 years old. Most often, schizophrenia develops in the late teens or early 20s.
At age 18, he suffered a psychotic break and required hospitalization. She finally found a treatment that was effective, but it took a long time.
Once we found something that seemed to address his symptoms on multiple levels, he was compliant, meaning he is taking his medication as scheduled. But medication is a small part of the treatment plan. He also keeps his appointments with his psychiatrist and therapist and does everything he can to maintain his overall health and well-being.
He is now 38 years old. He enjoys his life. He has friends. He has places he goes during the day that keep him involved with others. But it’s been a journey.
The hardest part is when someone starts experiencing symptoms. It’s rocky. There will be many ups and downs. It gets better over time. An engaged and informed loved one is often the best indicator of outcome for a person with schizophrenia.
‘The perfect Storm’
Very often, when people start to have symptoms, or when they have a full-blown psychosis related to schizophrenia, they resist treatment. It’s the perfect storm. There are young adults recovering, experiencing symptoms, people throwing out labels and resisting having a serious mental health condition.
For a parent or caregiver, this is a very difficult situation. They are 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 involved in treatment, we encourage family members to listen. Don’t just listen, but hear to what your experience is. Your reality is different from most people’s reality. I wouldn’t say you should agree with what they say if it’s wishful thinking. But you can empathize.
If they think someone is out to get them, you can say, “That sounds really scary. “You must be very worried.”
That is your reality. Imagine if 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 problems sleeping. The treatment will help them with their sleep cycles.
Maybe they want to go back to university. You can say, “I know you would 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 listening and empathizing, you can 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
Many people stop treatment because, honestly, the medications available for schizophrenia are not always effective. It can have horrible side effects and people lose hope and stop doing it.
One of the side effects is obesity. If he has a young woman who is told he needs to take this medication and gains 30 pounds in 3 months, she wants to stop taking it. The voices have stopped. But after a week or two the voices return and the cycle begins again.
It is common to try different medications at the beginning of treatment. That was true for my son too. He tried four or five antipsychotics targeting the most active part of schizophrenia: 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 is also aware that he needs the medication and that the side effects are not as bad as the psychosis itself. That’s a very mature place to be.
I offer people hope to keep searching and not settle. Always work together with a psychiatrist. And get the person with schizophrenia to sign a Health Insurance Portability and Accountability Act (HIPAA) consent so the psychiatrist can work with other mental health professionals. Chances are good that, over time, if you are persistent in looking for treatment options, you will find something that works.
Explain what the medications do
People with schizophrenia should be fully aware and informed about anything they put into their body. Part of getting them involved in your treatment is understanding the pros and cons of any type of medication and how you expect it to affect them.
Positive reinforcement
Once the medicine has taken effect and the symptoms have gone away, you can talk about it. “Do you remember last month when you heard voices and couldn’t sleep? Remember how scary and horrible that was? Now that the medications are working, it’s a good thing. “A really important step.”
It is positive reinforcement. You are communicating to them on an intellectual level about what they are doing and the results they are seeing. You can think about cause and effect: I like the effect, so I’ll keep doing this.
Gradual treatment if it doesn’t work
It is never good to abruptly stop treatment for schizophrenia. If they are not happy with the side effects or if the medication is not effective, emphasize the importance of working with their psychiatrist.
These are powerful medications that change the chemical balance in your brain. You may need to gradually reduce one medication and add another to your regimen to keep your blood levels sufficient. You want to avoid extremes and you don’t want to be completely knocked out.
Listen respectfully to why they want to stop and look for alternatives. There are many combinations of options. It takes patience with the process to find the ones that work. They don’t work immediately: they take a couple of weeks. Talk about what will be least disruptive to your life.
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