What is Anosognosia? We’re Starting a Family Support Group

Addendum 9/9/2024: This article is from October 2022. Unfortunately, this support group did not materialize. Please consider attending a standard NAMI Family Support Groups as NAMI facilitators are practiced in discussing coping with anosognosia.

Anosognosia is a term that describes a symptom experienced by those with serious mental illness in which a person cannot recognize that they have a mental health condition. This is often referred to as “lack of insight.” It is quite common, and many in the mental health support community are not aware of the term. The vast majority of people in the general population don’t know anything about it.

Our affiliate would like to help organize a virtual Family Support Group specifically for those caring for someone who exhibits anosognosia. We have one experienced facilitator trained and ready to go, Patti Sardella. We need at least one interested party to serve as co-facilitator. This person could be someone who currently supports a person with anosognosia or someone very familiar with the experience of others through their long term work as a NAMI teacher or facilitator. Those who serve as Support Group Facilitators must complete NAMI’s weekend long training class. At this point, we aren’t collecting names of people interested in attending such a support group, just those willing to consider taking on the role of group facilitator. Contact us at nami.cmsx@gmail.com to discuss this opportunity.

Please read Patti’s personal story, outlined below, that brought her to wishing to fulfill this mission. The button at the end of this page links to an article from the NAMI National Blog that addresses understanding anosognosia, changing our language, empathy, and spreading the word.  

Here is Patti’s personal story:

I am new to NAMI Mass after a 10-year span living in New Hampshire where I began my work with NAMI New Hampshire. I am delighted to be back in Massachusetts. I have a background as an academic studying medical sociology and research methods at the doctoral level and teaching at Northeastern University and some other colleges in the Boston area. I veered away from academia and began using the tools from my education for other purposes. 

My studies provided what I needed to begin my research and analysis on anosognosia. The more I learned, the more I understood there was a problem in the mental health care system. My research continued and, along with my experience, soon verified my understanding of the problem.

The idea for a support group focusing on anosognosia or “lack of insight” was initially prompted by my own experience.  Like so many others, I spent years struggling with my son who thought he didn’t need a doctor or a therapist. I thought he was being stubborn, or worse, that he was deliberately trying to frustrate or “get back at me” for some reason.  

My therapist recommended Dr. Xavier Amador’s book, “I’m Not Sick: I Don’t Need Help”, and my world changed. But I had no idea what to do with this new information and how to interact or support my son. That’s when I joined NAMI. I soon became a Family-to-Family teacher and a Family Support Group facilitator.   

While teaching and co-facilitating I continually noticed the participants who, quite simply, weren’t participating and looked confused. I knew what was happening. The idea for this new Family Support Group came together when a participant spoke up, clearly in frustration, and said loudly, “But my son WON’T take his medication and won’t go back to the doctor! He doesn’t think there’s anything wrong…!” I told him there was a name for what he was seeing in his son. When I told him about anosognosia, he was demonstrably ecstatic that what he was seeing was real and had a name. His joy and relief were palpable, followed by effusive gratitude. I proposed the idea to NAMI soon after.  

Understanding lack of insight offers tremendous opportunities to improve mental health care. Without recognition, the implications for negative impact on our society, already being seen, are tremendous.   

Most importantly, in my eyes the only place to begin is with the loved ones of the individuals claiming “there is nothing wrong with me.” These are the folks in the trenches with anosognosia, fighting an enemy they may know nothing about. A support group to educate these warriors is essential to a well-rounded approach to recovery. Please help me start this Family Support Group by volunteering to be a facilitator.