"There's nothing wrong with me!" I would hear my brother shout towards my family and I after several days of intense delusions and no sleep. At times he would be manic, bouncing off the walls, walking across the sofa and other furniture citing conspiracy theories and his ability to destroy the world with his thoughts. We would plead with him to take his prescribed medication but he believed he was fine and it was the rest of us who had a problem.
I've spoken to many families who have gone through or are currently going through this exact same scenario. Their loved one is creating dangerous situations, conflict is escalating in the household, and everyone involved is at a breaking point. The healthcare professionals that they've interacted with so far have been ineffective and often shut the family out of any treatment plan due to privacy concerns. As a result, the family is under-prepared to help their loved one's stick to treatment.
Families do need to be prepared for crisis scenarios if their loved one’s behavior becomes a danger to themselves or others, but there are other steps that family members can take to de-escalate tensions in the household and guide their loved one towards treatment. Families who have found their way to recovery have learned these lessons through many years of painful trial and error - this is how my family and I learned as well.
My brother was diagnosed with schizoaffective disorder when he was 14 years old; I was 11. I spent many years arguing with him, telling him that his delusions weren't real and accusing him of lying for attention or to stir up conflict in the household.
I interacted with him in that way up until I had an epiphany at 18 years old. I was leaving the house in my new, used car to go meet some friends. As I was pulling out of the driveway, my brother approached me, yelling and cursing - the confrontation nearly became physical, but my parents hurried outside to deescalate the situation.
When I drove off that day, it struck me that I was moving forward in life, hitting various milestones while my brother was stuck in place, still struggling to lead a stable life with symptoms of mental illness. I realized that seeing me drive off that day must have been a blow to his self-esteem and a trigger for his symptoms.
I realized that the symptoms he was experiencing in his mind must have been so intense that his extreme behaviors were actually a rational response to the severe anxiety and nightmare delusions that he constantly had to deal with. In that moment of realization, I shifted from feelings of resentment towards my brother to feelings of empathy.
A lack of insight
I learned recently that, with serious mental illness, refusal of treatment doesn't necessarily stem from denial. It often stems from a real impairment in brain functioning as a symptom called Anosognosia. It’s a symptom that’s not only prevalent with psychotic disorders but it also shows up in Alzheimer’s disease and other neurological brain disorders.
With Anosognosia, a person experiencing psychosis can lack the insight that they are experiencing symptoms at all. Imagine having an injury like a broken bone and being completely unaware of it? You would never get it treated and it would only get worse over time.
When my brother described a grand delusion, he really believed it, and when he said, "There's nothing wrong with me", he believed that too. No amount of arguing or logical explanation was going to change his mind. In fact, the more that anyone would try to 'convince' him that his beliefs were false, the more he would lose trust in that person.
The cycle of hospitalizations
In the U.S., when a person is over the age of 18 years old and refuses help, there is very little their family members or anyone else can do to force them into treatment until the moment when they become a danger to themselves or others. At which point, emergency services may be called and the person might be placed into a mandatory psychiatric hold.
Often when I speak to families, they describe the first mandatory psychiatric hold - also known as a 5150 in California - with a sense of relief. A sense that help has finally arrived and the nightmare is over. But too often they find that their loved one is released too early, within 3-48 hours of hospitalization, without being effectively treated. Their loved one is sent home and the family finds themselves right back in the chaos they were in before hospitalization.
Unfortunately, this often results in a traumatic cycle of hospitalizations as the family struggles to find ways to convince their loved one to accept treatment and to find effective treatment providers.
This is not to say that families shouldn’t bother calling emergency services if a person is in a psychiatric emergency, but to point out that families tend to be seriously under-prepared to support their loved one’s post-discharge due to the flaws of the mental healthcare system.
There is Hope
When a loved one refuses help for symptoms of mental illness, there are things that their family and friends can do to improve the trajectory of the situation aside from waiting for a crisis to occur.
When family members are educated about mental illness, trained with communication and problem solving skills, and empowered to work as a member of their loved one's care team rather than outside of it, they are far more likely to not only help their loved one into treatment but also to improve their relationship with their loved one and to manage their own stress effectively.
In fact, there's a whole body of research that shows how effective family members can be at improving outcomes for their loved one. But to be clear, this is not a quick fix. It requires long-term commitment to develop the knowledge and skills for family members to most effectively support their loved one.
One of the core principles that families can learn is how to prioritize and establish a strong relationship with their loved ones even when symptoms get in the way. When we learn to empathize and actively listen to our loved ones' experiences rather than confront their delusions, they begin to see us as allies rather than adversaries and ultimately as partners on their journey to recovery. This means that during a moment of insight, when they are ready to engage in treatment, they are more likely to embrace our support.
It took me seven, difficult years to learn this lesson. But when I did, my relationship with my brother improved significantly.
You don’t have to wait for a crisis in order to guide your loved one towards treatment. You can develop the skills to help them identify benefits of treatment for themselves that work for their own goals. That being said, you do want to be prepared for crisis situations if they were to arise. This includes having quick access to your loved one’s psychiatrist, therapist, or case manager (if they have engaged with any in the past) and asking emergency services for a Crisis Intervention Team (CIT) if one is available in your area.
This is why Stephanie Greer and I are building Akin Mental Health - to teach families the lessons and tools that we know will help them and their loved ones find recovery faster so that their families don’t have to go through the harrowing decades-long journey that many other families have gone through.
My brother is defined more broadly than the mental illness that he suffers from. He loves to read philosophy books, he's practically an encyclopedia of underground hip-hop, and he loves to make people laugh. It took me a long time to separate my brother from the illness that he suffers from, and it took me a long time to prioritize my relationship with him over trying to convince him of what to believe or not to believe.
Over time, he's found his own reasons to seek treatment which weren't about controlling symptoms of schizoaffective disorder but rather to reduce conflict in his relationships and to live at home with family and with a sense of stability in his life.