A diagnosis of any major illness, such as cancer, diabetes, or a heart attack, is devasting. Both the person with the diagnosis and their family and friends are affected. But receiving a schizophrenia diagnosis can present additional unique challenges. The afflicted individual may have no awareness that anything is wrong and refuse assistance and treatment. Some people may believe that those with schizophrenia do not recover, and easily give up. However, the reality today is that many people like me, even with severe and treatment-resistant psychosis, can often achieve a high level of recovery. Many will work again and thrive in their community.
The following are some of the unique challenges a young person with a schizophrenia diagnosis and their family may face.
Anosognosia (Lack of Insight)
Most people with schizophrenia have a unique medical condition called “anosognosia,” which means they have no awareness that anything is wrong with them. Personally, I remember having severe paranoia, delusions, and auditory and visual hallucinations, but thinking I was perfectly healthy. Anosognosia can also be seen in persons who have had a recent stroke and believe a limb is working normally when actually they cannot move it at all.
During my first hospitalization, I was entirely unaware of how much better I was doing on my medication. I remember discontinuing my antipsychotic medication, unable to cope with sedation, weight gain, and my blunt affect. This quickly led to a psychotic relapse.
Discussions on side effects are crucial. A person who prescribes antipsychotics should let their patient know that, if side effects happen, they will manage the side effects, treat them, or switch the person to a different antipsychotic. Patients must be aware that if they stop and restart antipsychotics, they can become permanently less effective, which leads to disability. I remember feeling betrayed by my doctor, who had never mentioned possible side effects when he mandated I take a medication that made me feel so terrible. I wondered how he could do this to me, and I wanted to flush my medication down the toilet.
Looking back, I understand that long-acting injectable antipsychotics (LAIs) are one of best treatment options, so that a person will not forget to take the pills. If I had been on an LAI, I may have had side effects for some time, but they could have been managed, and it could have prevented my next relapse.
Financial Hurdles
A schizophrenia diagnosis can present some financial challenges. In my case, due to untreated illness, I was unable to work any job. I remember being unable to do much of anything except sit in parks and stare into space for hours at a time (due to my illness, as I never used alcohol or drugs).
When first hospitalized, my treatment team had me sign paperwork for medical benefits. But when I returned to my parents’ house, after discontinuing my medication, I refused to apply for Medicaid and SSI benefits. Just the thought made me feel like a loser. When I restarted my medication, suddenly, applying for Medicaid and SSI benefits made sense. The funding I was awarded became key to regaining independence.
Finding a Living Situation
I am very grateful to my parents for taking me in despite my schizophrenia diagnosis and after my struggles with years of homelessness when I had completely cut them off. My family was so important, as it can be difficult for a person with schizophrenia with a recent relapse to live alone. Isolation can lead to psychosis.
But when I discontinued my antipsychotic and was becoming psychotic again, I was intolerable to live with. I had no interest in my family, spent hours alone in their basement, constantly laughed way too loud (in my psychotic state, it made me feel special), and refused to keep good hygiene.
I am grateful this period in my life without medication did not last long, as I worry I may have even become violent if someone had tried to tell me I had schizophrenia. Following my second hospitalization, I decided to always adhere to medication. On medication, I would successfully live for two years in my parents’ home before moving out to attend college.
Looking back, I see that if I had continued in psychosis with unpredictable behavior, living with my parents may not have been the best option. Over the past few years, I have been surprised at how much success some people in full recovery from schizophrenia have had with group homes. Many group homes provide stable housing and food, and monitor medications to be sure residents are taking them at the same time every day. They also provide social opportunities and gatherings, and a chance to make lasting friends with residents and staff.
Psychosis Essential Reads
Finding a Good Provider
One challenge with a new diagnosis of schizophrenia is to find a psychiatrist or psychiatric nurse practitioner who is compassionate and dedicated to achieving the highest level of recovery possible.
Unfortunately, many providers have wait lists that last for months, which was my case. In the interim, before I could see my outpatient psychiatrist, my family doctor wrote a prescription for me to get my antipsychotic.
Making Goals
A schizophrenia diagnosis may be a significant hurdle in a person’s life, but it is not insurmountable. With adherence to treatment, most people will reach a level of meaningful recovery and achieve insight into the management of the disorder.
From the very beginning, offer hope for a new life. One of my first psychiatrists told me that if I always stayed on antipsychotic medication, I might be able to return to college. This conversation led to medication adherence, which enabled me to graduate from college four years later with a GPA of 3.8 in molecular biology.
Even the sickest of us will often enter full remission today, as I did after four years of psychosis, homelessness, and treatment resistance. It is important to find a provider who will always fight for the best outcome, and to never give up on a person with schizophrenia.