A recent study in Current Psychology explored the lived experiences of individuals diagnosed with schizophrenia. Analyzing posts from an online forum, the study revealed the complex and often contradictory effects of receiving a schizophrenia diagnosis, ranging from stigma and loss of identity to greater understanding and improved access to care.
Led by a team of UK researchers, the study examined 105 posts from a Reddit forum where individuals discussed their experiences with a diagnosis of schizophrenia. The researchers, who have personal or caregiver experiences with schizophrenia, identified five main themes: denial and acceptance, stigma and selective disclosure, the complex diagnostic process, changes in self-identity, and support networks. These findings highlight the dual nature of a schizophrenia diagnosis, showing how it can both harm and help those it labels.
“Previous research shows that diagnosis can be contradictory and complex for the individual. This is further complicated by the heterogeneity of diagnosis, which means that individuals with the same label can have completely different experiences,” the authors write.
“For example, in a sample of seven British participants, Howe and colleagues found that diagnosis was helpful in promoting access to support, but harmful in leading to stigma and social exclusion.”
The diagnosis of schizophrenia is contested because it encompasses a wide and heterogeneous range of symptoms and experiences, leading to debates over its validity and utility. Furthermore, the diagnosis often carries a significant stigma, affecting individuals’ self-perception and social interactions, and can result in different and sometimes conflicting treatment approaches. Studying how patients navigate and experience this diagnosis is important because it provides insight into the real-world implications of the label, including its effects on identity, access to care, and overall well-being. Understanding these experiences can inform more empathetic, personalized and effective mental health care practices.
The authors wanted to better understand the lived experience of service users navigating the diagnostic process, both negative and positive aspects. They conducted a post-data thematic analysis to find common themes in the users’ experience of the diagnostic process.
105 individuals were included in the research after posting relevant information on a popular “subreddit” between June 2021 and June 2022. Demographic data was only available for some of the posters, but the largest number of people (n=26) lived in the United States; the most common age group was 25-39 (n=22), followed closely by 18-24 (n=19).
The gender of the posters was relatively equal between men (n=23) and women (n=25), followed by a smaller number of LGBTQIA+ individuals: “3 transgender men, 1 transgender woman, 3 genderqueer, 1 genderfluid and 2 no. -binary [individuals]”.
According to the authors, the research team (two academics and four postgraduate students) “together” had lived experience of schizophrenia and other diagnoses, as well as lived experience of caring for someone with “a diagnosis of schizoaffective disorder or symptoms of psychosis”.
The study authors found five main themes:
- Denial and acceptance
- Stigma of diagnosis and selective disclosure
- Complex diagnostic process
- Losing, maintaining and finding a sense of self
- Getting, finding and providing support
Denial and acceptance
Denying OR resisting diagnosis was a common experience for posters. This included various types of “denial”, such as feeling that the diagnosis of schizophrenia was more serious than the users’ experience, being skeptical of schizophrenia as a psychiatric category, or simply feeling as if the diagnosis did not match their personal experience:
“…several posters doubted the reliability of the DSM diagnosis. They discussed their dislike of complicated experiences being put ‘in a box’ and talked about how psychiatry had a limited capacity to understand people. For example, one reply to poster 21 said ‘I have been diagnosed with schizophrenia. However, I think psychiatry is a poor attempt to understand something that is simply beyond its limitations as an institution.’
Other posters He did accept the diagnosis and found it helpful:
“…you know what’s going on. You have a handle on your warning signs and symptoms. Doctors can treat you accurately and your healthcare team immediately knows how to help you. You will better understand yourself and how your brain works. It was a huge relief to get the diagnosis because I finally felt in control and in the know.”
However, some people who discussed accepting the diagnosis had mixed feelings about it. One individual said that it took them “6 months of therapy to accept the diagnosis the way they told me it should.” Others stated that they went back and forth between accepting and rejecting the diagnosis.
Stigma of diagnosis and selective disclosure
Stigma was a common experience for those receiving a diagnosis of schizophrenia, including “self-stigma” as well as “other-stigma”. Users discussed being cautious about disclosing their diagnosis to medical professionals as well as family and friends, preferring to “test the waters” first to make sure it was safe.
Posters cited fears that a diagnosis of schizophrenia would cause others to think of them as “incompetent”:
“Terrified by people who know I’m schizophrenic, because nine times out of ten, they either treat you like an incompetent child or like you’re dangerous. I’m nobody, I’m a functional adult! But people just assume you can’t be an adult if you’re mentally ill.”
On the self-stigma side, posters used phrases like “feeling completely worthless and damaged” in relation to receiving the diagnosis.
Complex diagnostic process
Service users usually described a lack of trust in doctors and the medical establishment due to several issues with the process: taking several years, receiving multiple diagnoses, not being told about their diagnosis and actually being denied a diagnosis because they did not fit the the stereotype. of a person with schizophrenia:
“I wanted to finally get someone to diagnose me. The young doctor spoke to me on the phone once and concluded that I am very articulate. People with schizophrenia don’t speak as well as I do.”
Losing, maintaining and finding a sense of self
A sense of sadness or loss about identity/self is commonly reported:
“I just can’t help but feel overwhelmed. I had hopes and dreams. I have been very accomplished in my career for my age and have had to resign over these issues. People have said I can be whatever I want, but I can’t, lol.”
This included both personal perceptions and perceptions coming from others in their lives:
“I still want people to see me as the person I once was. I went from being the nicest person in the room to saying literally nothing about anyone. It’s hard when you have an image of who you should be and subconsciously monitor every little decision you and others make.”
Some posters described the meaning of their diagnosis, for example, describing their journey with schizophrenia in spiritual terms or stating that they had the freedom to “identify with the labels”.
Getting, finding and providing support
Posters often discussed the benefits of having a non-judgmental space like the subreddit to discuss their experiences. Requests for support and encouraging forum comments were common:
“Stay there. It can be challenging to redirect your entire trajectory by discovering a mental illness and receiving a diagnosis. Your normal life is whatever you make of it. Having schizophrenia can be challenging, but many of us realize that we can still have fulfilling lives.”
Users also mentioned the benefits of having a good support network, from friends to therapists.
Concluding their analysis, the authors mentioned how this research can inform best clinical practice in psychiatry:
“…clinicians need to explain how a diagnosis is not an exact and exact science, but that the label is often a best judgment that may change later. The diagnosis (and any changes to it) should be made in collaboration with the service user, allowing enough time to discuss and research the most appropriate options for each individual. After diagnosis, the person should be offered support from clinicians who have knowledge of how to deal with feelings of loss of identity.”
The authors acknowledged a primary limitation of the study as the lack of sufficient data to draw conclusions about differences in experience related to ethnicity/race, gender, age, location, and other “confounding” factors.
They also mentioned the ethical difficulties of conducting research based on anonymized public Internet forums. The research team attempted to maintain confidentiality by changing the wording of the comments so that an Internet search with the new terms would not link back to Reddit posts.
This research supports previous findings, for example, that a diagnosis of schizophrenia often carries a harmful stigma and that the prevailing biomedical model tends to perpetuate this harm.
****
Lyons, M., Gupta, V., Blaney, PS, Ogenyi, A., Webster, E., & Brewer, G. (2024). The complex lived experience of the diagnosis of schizophrenia: A thematic analysis of online forum posts. Current Psychology: A journal of diverse perspectives on diverse psychological issues, 1-12. https://doi.org/10.1007/s12144-024-06175-2 (Link)
#Unraveling #Diagnosis #Schizophrenia #Stigma #Identity #Support
Image Source : www.madinamerica.com