The month of May is Mental Health Awareness Month. I find this is a time of reflection, inspiration, and education. I remember my four years homeless from 2003 to 2007 when I was very seriously mentally ill with delusions, paranoia, and hallucinations. I was entirely unaware of my illness, which is a condition in its own right called anosognosia. I thought I was one in a million and would be rich and successful. In reality, I was just another homeless person in Los Angeles County, a member of a group of tens of thousands also struggling through homelessness and severe mental illness.
As we enter this important month, I reflect on what would have helped me the most in my time of great need. Many major changes are needed throughout the United States. The following are four of my wishes and goals to meet critical needs for people suffering with psychosis throughout the United States.
More beds for people with acute illness
In my opinion, I never should have been allowed to remain homeless, confused, and severely mentally ill for four years without intervention. But even more importantly, I wish I had been prevented from living off food found in garbage cans while sleeping outside alone and unprotected in a dangerous part of the city. I spent the last 13 months of my four years homeless living outside.
I chose to live off garbage I found and sleep outside because I was suffering from hallucinations and delusions. It is so difficult in the United States to get people like myself, in desperate need, admitted to a psychiatric hospital. In the 1940s, there were half a million hospital beds, and it was easy (perhaps even too easy) to admit a person struggling with severe mental illness. Today, we have the opposite problem. Following a movement of deinstitutionalization in the 1960s and 1970s, the number of beds has been reduced from half a million to 40,000.1 Only the sickest and most severely mentally ill qualify to have one of these beds. And due to the shortage, patients are released from the hospital as soon as possible, even if they are not yet ready for discharge, and are still severely ill.
Like many with severe mental illness, I had to decompensate for years until I descended into a severe enough level of illness to qualify for a bed in 2007.
Greater awareness and use of long-acting injectables to prevent relapse
When I was released from my first hospitalization, I did what about 87 percent of patients with psychosis do after a few months2—I discontinued my antipsychotic medication, unaware of the risks. As my doctor expected, I quickly had another psychotic episode. Fortunately, when I went back on my medication, it still helped significantly. Often, if antipsychotics are stopped and restarted, they may become permanently less effective, even at higher dosages.
The very best way to keep patients from going off antipsychotic medication is the use of a long-acting injectable (LAI) medication. LAIs are probably the best option we have for preventing relapse,3 but they are rarely offered to patients, and almost never used in the first psychotic episode. The truth is that LAIs are convenient, and many people with schizophrenia prefer this option. For those who are too sick to recognize their mental illness, staying on an LAI can very often bring them out of psychosis to a point where they see the need to continue medication.
Early use of clozapine for treatment resistance
If a person with psychosis does poorly on the first two antipsychotics they try, clozapine should be seriously discussed. Personally, my first medications were good enough to keep me outside the hospital, but I was still totally disabled. Like most people struggling to find the right medication, I had never even heard of clozapine.
Clozapine is severely underutilized, though it is the gold standard antipsychotic.3,4 Many people like me who fail all other antipsychotics respond very positively to clozapine. Many, like myself, will make a complete recovery on clozapine and return to school, work, and a healthy social life. Clozapine is also highly effective at treating suicidality.
I tried clozapine after failing five other antipsychotic medications. Looking back, it should have been offered after I failed the first two.
Widespread public education about the risks of marijuana
I never used marijuana, but in my advocacy work, I see its devastating effects every day. Many people who may have never developed psychosis develop it after even limited exposure. Often, this may lead to a lifetime of symptoms, despite permanently discontinuing marijuana. Society is under the impression that marijuana is considered natural and safe, but this is not the case. Not everyone who uses marijuana will develop psychosis, just like not everyone who smokes will develop lung cancer. But young people who experiment with this drug should know the risks, especially if they have a history of mental illness of any kind in their extended family. Much education is needed to warn the public.
Psychosis Essential Reads
Join me this month
Please join me in recognizing this month and working toward needed change. I hope someday we will see these unmet needs for the future of mental health turned into reality. There is always hope for recovery. Medications today are better than they have ever been. As we move forward, we will not lose sight of where we came from and will always fight to give our loved ones the best quality of life possible.