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In my previous post, I described compassionate listening. Listening is the first part of the LEAP method, which stands for Listen, Empathize, Agree, and Partner. LEAP is championed by Xavier Amador in his book I Am Not Sick, I Don’t Need Help.
During my first year on partially effective antipsychotic medications with bad side effects (I tried five unsuccessfully over 12 months), I badly needed empathy from my family, my doctor, and my treatment team.
I began my first antipsychotic medication after my diagnosis in 2007, and I left the hospital on that medication. After my release from the hospital, I moved into my parents’ house in Ohio to recover and rebuild my life.
Near the start of my treatment, my mom mentioned that she needed to take a beta-blocker every night for a heart condition. She invited me to take my medications together with her, making me feel there was nothing unusual in taking a pill, even an antipsychotic. I appreciated her invitation to take our pills together, even though she wasn’t dealing with severe side effects as I was.
However, about two weeks following my return to Ohio, the medication’s side effects began to appear, so I did what I thought was the logical thing and went off it. Despite intolerable side effects, the medication was partially effective and helping to keep my psychosis at bay. Going off of it quickly led to my second hospitalization.
During my second hospitalization, treatment team members made some mistakes. First of all, they assured me that if I stayed on the problematic medication, I might be able to work or take university classes again. It is possible for some mentally ill persons to recover quickly on the same medication and return to work and school. But this medication rendered me totally disabled. Being offered false hope from my treatment team in the midst of my suffering only made things worse.
Also, my treatment team decided to put me on a long-acting injectable (LAI) version of the same medication without my consent. LAIs are proven to prevent relapse, but my treatment team did not discuss this with me. The significant side effects I reported were disregarded. Instead, I was made to feel like a bad person or naughty child for going off the medication that had caused me so much suffering.
After receiving my first injection, I began to see the injections as a punishment that I did not deserve. When I left the hospital, I went back on the pills. Going on and off injections and back on pills can be dangerous, as the medication levels in your body fluctuate. The treatment team was right to suggest injectables but badly needed me to consent. Perhaps no one realized that when I left the hospital, I would be in the driver’s seat for many decisions every day including whether or not to comply with medication, oral or injected.
Shortly before I left the hospital, one of the staff members who had treated me like a child took me out of the psychiatric ward to the hospital cafeteria where she bought me a big cookie, which I really appreciated. She made me feel as though I were special, and not a faceless mentally ill individual who had been hospitalized. I was touched by her generosity.
Though I had trouble with my treatment team during my second hospitalization, my doctor was excellent. He never promised me that my medication would enable me to return to school. However, he explained that every time I discontinued my antipsychotic medication and restarted it again, my prognosis might be lower, as the medication might not work as well as it did initially due to being interrupted and restarted. He pleaded with me to stay on medication in order to promote the highest level possible of my recovery and have the best chance of a higher-quality life. He listened carefully to my desire to return to college and assured me there was hope for my future.
He also mentioned that trying other medications was an option. When the right antipsychotic was found, the side effects abated and greater recovery was realized. Like my mother with her beta-blocker, this doctor also assured me that there was good reason to follow through with treatment, and that most people have a medical condition of some sort whether it be diabetes, asthma, or another condition that requires medication to maintain a higher level of health and quality of life.
When the doctor reached out to me with hope for my future, I trusted him and was ready to listen. Again, Dr. Amador writes: "LEAP works because it is based on the strength of the relationship, not the strength of the argument" (p.112). This doctor made an effort to look deeper and see my potential.
The health and well-being of my current life are a testament to how compassionate listening and empathy can powerfully change a person’s life.
I will consider the third part of LEAP, agreeing, in my next post.
References
Amador, Xavier. I Am Not Sick, I Don't Need Help: How to Help Someone Accept Treatment. Vida Press, August 14, 2020.
