My Son Says He's Not Mentally IllSep 21, 2021
Parents sometimes contact me for advice about how to help a loved one who says they are not mentally ill and don't need meds.
Here are some of my thoughts, shared recently with a distraught parent:
My heart goes out to you and your son. You are definitely doing the right thing in sticking by your son during these hard times. It's not a sprint. It's a marathon and your self-care is paramount so you can go the distance. Be sure to connect with lots of other parents for support and wisdom. Watch lots of recovery videos. They will keep you hope-filled. Get a referral to a coordinated specialty care team (CSC) in your area. These are small, mobile teams that specialize in working with young people diagnosed with early psychosis. Their outcomes are superior to treatment-as-usual. An example of such a model for care is OnTrackNY. Finally, be sure to connect with a peer support staff or peer specialist. These are folks with the lived experience of their own recovery after a diagnosis of mental illness and/or substance use. Peer supporters connect with folks in entirely non-traditional ways and can bring hope and know-how to loved ones.
When supporting someone who believes they are not mentally ill, it's always important to remember they may be correct. Diagnosis is not an exact science. For instance, African Americans are more likely to be misdiagnosed with schizophrenia when compared to whites. It's always best to get more than one medical opinion.
I recommend exploring with the individual their understanding of what is happening in their lives. What is their understanding of why they go to the hospital? What is their understanding of what keeps them from achieving the life they want for themselves?
The key is to engage with the individual around what-matters-to-me. Don't focus on symptoms or the like. Focus on soccer, or school or friendship, or getting a driver's license. Then, work with the person to manage anything that is interfering with achieving what-matters-to-me. Getting treatment is not the goal. The goal is getting the- life-I-want. Treatment may be a means to achieving that goal.
Sometimes people feel they are having a spiritual emergence and they may be correct. Experientially, dissolving the ego is a first stage of spiritual emergence and it is often part of the experience of early psychosis as well. Studying the work of David Lukoff Ph.D. can be helpful in this regard. And remember that authentic, "real", life-enhancing spiritual experiences and lessons happen for many during experiences described by clinicians as psychosis. For example, check out my account of the Flyer of the Kite. The basic idea in all of this is to be extremely respectful of your loved one's understanding of their experience. All, or part, of their understanding can be a force for healing. And the search for meaning continues and evolves over time as lessons are learned, so it's a very dynamic process.
When working with someone who believes they are not mentally ill, my approach is to agree with the individual - Yes, I agree with you. YOU are not mentally ill. You are a person, not an illness. You are not a schizophrenic or a bipolar. I am here to help you live your life, not your diagnosis. There is no sense in arguing or trying to convince someone they are mentally ill. In my experience, what helps is working with the individual to balance their beliefs and values. Here's a story:
I was working with a peer who had a history of abruptly going off meds which seemed to be helpful, at least to the team. He believed he was not mentally ill and therefore did not need meds. One time, while not taking meds, he got verbally aggressive with a checkout cashier. Another cashier called security, and eventually, he was involuntarily admitted to the hospital. While still there, my peer and I talked, not about beliefs, but about the values we lived by. It turned out he valued being a kind person and being a law-abiding citizen. He aspired to someday serve the community as a first responder. We compared his belief that he is not crazy and doesn’t need medicine, with his value of being a kind, law-abiding citizen. His belief and his values clashed in the real world, evidenced by his outburst frightening the cashier. Our conversation about values, rather than beliefs, helped my peer eventually reframe how he thought about medications.
Finally, remember that recovery is often a journey of transformation. It does not necessarily mean going back to who we used to be. Parents often say 'I want to get my child back'. In my opinion, parents cannot get their children back, because their children have not left. They are still here, evolving, growing, and changing. Human resilience does not end at diagnosis.