Study Reveals Contradictory Effects of Schizophrenia Diagnosis on Identity and Treatment

A recent study in Current Psychology explored the lived experiences of individuals diagnosed with schizophrenia. Analyzing posts from an online forum, the study uncovered the complex and often contradictory effects of receiving a schizophrenia diagnosis, ranging from stigma and identity loss 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 schizophrenia diagnosis. The researchers, who have personal or caregiving experiences with schizophrenia, identified five key themes: denial and acceptance, stigma and selective disclosure, the complicated 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 demonstrates that diagnosis can be contradictory and complex for the individual. This is even further complicated by the heterogeneity of the 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 useful in promoting access to support but harmful in leading to stigma and social exclusion.”

The schizophrenia diagnosis is contested because it encompasses a broad and heterogeneous range of symptoms and experiences, leading to debates over its validity and utility. Additionally, the diagnosis often carries a significant stigma, impacting individuals’ self-perception and social interactions, and can result in varied and sometimes conflicting treatment approaches. Studying how patients navigate and experience this diagnosis is important because it provides insights 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 gain a better understanding of the lived experience of service users navigating the diagnosis process, both in its negative and positive aspects. They conducted a thematic analysis of the post-data to find common themes in users’ experience of the diagnosis process.

105 individuals were included in the research, having posted relevant information on a popular “subreddit” between June 2021 and June 2022. Demographic data was only available for some of the posters, but the highest 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 posters was relatively even 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 gender fluid, and 2 non-binary [individuals]”.

According to the authors, the research team (two academics and four postgraduate students) “collectively” 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’s authors found five overarching themes:

• Denial and acceptance
• Stigma of diagnosis and selective disclosure
• The complicated process of diagnosis
• Losing, maintaining, and finding a sense of self
• Receiving, finding, and providing support

Denial and acceptance

Denying or resisting the diagnosis was a common experience for posters. This included different kinds of “denial,” such as feeling like a diagnosis of schizophrenia was more serious than users’ experience, being skeptical of schizophrenia as a psychiatric category, or simply feeling like the diagnosis did not fit their personal experience:

“…some posters doubted the credibility of the DSM diagnosis. They discussed their dislike for having complicated experiences put ‘in a box’, and talked about how psychiatry had a limited capacity to understand people. For instance, a response to poster 21 stated ‘I am diagnosed as having schizophrenia. However, I think that psychiatry is a feeble attempt to understand something that is simply beyond its limitations as an institution.’”

Other posters did accept the diagnosis and found it beneficial:

“…you know what is going on. You have a handle on your warning signs and symptoms. The doctors can treat you accurately and your health team knows immediately how to help you. You will have a better understanding of yourself and how your brain works. It was such a relief to get the diagnosis because I finally felt in control and in the know.”

Several people who discussed accepting the diagnosis had mixed feelings about it, however. One individual stated that it took them “6 months of therapy to accept the diagnosis as I was told I should.” Others stated that they went back and forth between acceptance and rejection of the diagnosis.

Stigma of diagnosis and selective disclosure

Stigma was a common experience for those receiving a schizophrenia diagnosis, including “self-stigma” as well as “other-stigma.” Users discussed being careful 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 mentioned fears that a diagnosis of schizophrenia would lead others to think of them as “incompetent”:

“terrified of people knowing I’m schizophrenic because nine times out of ten, they either treat you like an incompetent child or as if you were dangerous. I am neither, I’m a functioning adult! But people just assume you cannot be an adult if you are mentally ill.”

On the side of self-stigma, posters used phrases like “feeling utterly worthless and defective” in association with receiving the diagnosis.

The complicated process of diagnosis

Service users commonly described a lack of trust in doctors and the medical establishment because of 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 stereotype of a person with schizophrenia:

“I wanted to finally get someone to give me the diagnosis. The new doctor talked to me on the phone ONCE and ended up concluding that I’m too articulate. People with schizophrenia don’t speak as well as I do.”

Losing, maintaining, and finding a sense of self

A sense of grief or loss around identity/selfhood was commonly reported:

“I just can’t help but feel crushed. I had hopes and dreams. I was very accomplished in my career for my age and I had to resign due to these issues. People have been saying I can be whatever I want, but I can’t, lol.”

This included both personal perceptions as well as 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 most outgoing person in the room to saying literally nothing around anyone. It’s hard when you have an image of who you’re supposed to be & subconsciously monitoring every little decision you and others make.”

Some posters did describe making meaning out of their diagnosis, for instance, describing their journey with schizophrenia in spiritual terms or stating that they had agency in how to “identify with the labels.”

Receiving, finding, and providing support

Posters frequently discussed the benefits of having a nonjudgmental space like the subreddit to discuss their experiences. Requests for support and encouraging comments on the forum were common:

“Hang in there. It can be challenging to have your whole trajectory redirected by discovering a mental illness and receiving a diagnosis. Your normal life is whatever you make of it. Having schizophrenia can be challenging, but a lot of us find 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 could inform better clinical practice in psychiatry:

“…clinicians should explain how a diagnosis is not an exact and precise science, but that the label is often the best judgment that can change later. The diagnosis (and any changes to it) should be done in collaboration with the service user, allowing plenty of time to discuss and research the best-fitting options for each individual. After diagnosis, the person should be offered support from clinicians knowledgeable of how to deal with the sense 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 “intersectional” factors.

They also mentioned the ethical difficulties of conducting research based on anonymized, public internet forums. The research team attempted to preserve confidentiality by changing the wording of comments so that an internet search with the new terms would not link back to the Reddit posts.

This research supports previous findings, for example, that a schizophrenia diagnosis often carries a harmful stigma and that the prevailing biomedical model tends to further this harm.

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Lyons, M., Gupta, V., Blaney, P. S., Ogenyi, A., Webster, E., & Brewer, G. (2024). The complex lived experience of schizophrenia diagnosis: A thematic analysis of online forum posts. Current Psychology: A Journal for Diverse Perspectives on Diverse Psychological Issues, 1-12. https://doi.org/10.1007/s12144-024-06175-2 (Link)