A recent I studynorth Current Psychology explored the lived experiences of people diagnosed with schizophrenia. By analyzing posts from an online forum, the study uncovered the complex and often contradictory effects of receiving a schizophrenia diagnosis, ranging from stigma and loss of identity to greater understanding and better access to care.
Led by a team of researchers in the United Kingdom, the study examined 105 posts from a Reddit forum where people discussed their experiences with a schizophrenia diagnosis. The researchers, who have personal or caring experiences with schizophrenia, identified five key themes: denial and acceptance, stigma and selective disclosure, the complicated process of diagnosis, 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 the diagnosis can be contradictory and complex for the individual. “This is further complicated by diagnostic heterogeneity, meaning 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 detrimental in causing stigma and social exclusion.”
The diagnosis of schizophrenia is controversial because it encompasses a wide and heterogeneous range of symptoms and experiences, generating debates about its validity and usefulness. Furthermore, the diagnosis often carries significant stigma, which affects individuals’ self-perception and social interactions, and can lead to varied and sometimes contradictory 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 service users’ lived experience of going through the diagnosis process, both its negative and positive aspects. They conducted a thematic analysis of the subsequent data to find common themes in users’ experience in the diagnostic process.
The research included 105 people who 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 largest number of people (n=26) lived in the United States; the most common age group was 25 to 39 years (n = 22), followed closely by 18 to 24 years (n = 19).
The gender of the posters was relatively even between men (n=23) and women (n=25), followed by a smaller number of LGBTQIA+ people: “3 transgender men, 1 transgender woman, 3 genderqueer, 1 genderfluid, and 2 non-binary [individuals]”.
According to the authors, the research team (two academics and four postgraduate students) “collectively” had lived experiences of schizophrenia and other diagnoses, as well as lived experiences of caring for someone with “a diagnosis of schizoaffective disorder or symptoms of psychosis.”
The study authors found five general themes:
- Denial and acceptance
- Diagnostic stigma and selective disclosure.
- The complicated diagnostic process.
- Lose, keep and find the meaning of self
- Receive, find and provide support
Denial and acceptance
Deny either resisting The diagnosis was a common experience for the posters. This included different types of “denial”, such as feeling that a diagnosis of schizophrenia was more serious than the users’ experience, being skeptical about schizophrenia as a psychiatric category, or simply feeling that the diagnosis did not fit their personal experience:
“…some posters doubted the credibility of the DSM diagnosis. They spoke of their distaste for having “pigeonholed” complicated experiences and talked about how psychiatry had a limited ability to understand people. For example, one response to poster 21 read, “I was diagnosed with schizophrenia.” However, I believe that psychiatry is a weak attempt to understand something that is simply beyond its limitations as an institution.’”
Other posters did He accepted the diagnosis and found it beneficial:
“…you know what’s happening. You have control over your warning signs and symptoms. Doctors can treat you precisely and your health team immediately knows how to help you. You will have a better understanding of yourself and how your brain works. It was a huge relief to receive the diagnosis because I finally felt in control and informed.”
However, several people who discussed accepting the diagnosis had mixed feelings about it. One person stated that it took them “6 months of therapy to accept the diagnosis like they told me I should.” Others stated that they went back and forth between accepting and rejecting the diagnosis.
Diagnostic stigma and selective disclosure.
Stigma was a common experience for those receiving a diagnosis of schizophrenia, including “self-stigma” and “other-stigma.” Users mentioned being careful when disclosing their diagnosis to medical professionals, as well as family and friends, preferring to “test the waters” first to make sure it was safe.
The posters mentioned the fear that a diagnosis of schizophrenia would lead others to think they were “incompetent”:
“I’m terrified of people knowing I’m schizophrenic because nine times out of ten they treat you like an incompetent child or like you’re dangerous. I am neither of those things, I am a functional adult! But people just assume you can’t be an adult if you have a mental illness.”
On the self-stigma side, posters used phrases such as “feeling completely worthless and defective” in association with receiving the diagnosis.
The complicated diagnostic process.
Service users commonly described a lack of trust in doctors and the medical establishment due to various problems with the process: taking several years, receiving multiple diagnoses, not being informed of their diagnosis and actually being denied a diagnosis because they did not fit the stereotype. of a person with schizophrenia:
“I wanted someone to finally give me the diagnosis. The new doctor spoke to me on the phone ONCE and ended up concluding that I am too articulate. “People with schizophrenia don’t speak as well as I do.”
Lose, keep and find the meaning of self
A sense of pain or loss around identity/self was commonly reported:
“I just can’t help but feel crushed. She had hopes and dreams. I had a lot of achievements in my career for my age and I had to quit because of these problems. People have been saying I can be whatever I want, but I can’t, lol.”
This included both personal perceptions and perceptions coming from other people 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 to anyone. It’s hard when you have an image of who you’re supposed to be and you unconsciously oversee every little decision you and others make.”
Some posters described making sense of their diagnosis, for example, describing their journey with schizophrenia in spiritual terms or stating that they had agency to “identify with labels.”
Receive, find and provide support
Posters frequently discussed the benefits of having a non-judgmental 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 reorient your entire trajectory upon discovering a mental illness and receiving a diagnosis. Your normal life is what you make of it. Having schizophrenia can be challenging, but many of us find that we can still have a life.” full.”
Users also mentioned the benefits of having a good support network, from friends to therapists.
In concluding their analysis, the authors mentioned how this research could inform better clinical practice in psychiatry:
“…doctors should explain that 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 made in collaboration with the service user, leaving sufficient time to discuss and investigate the most suitable options for each individual. After diagnosis, the person should be offered support from doctors with knowledge of how to deal with the feeling 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 public and anonymous Internet forums. The research team attempted to preserve confidentiality by changing the wording of the comments so that an Internet search using the new terms would not link to the Reddit posts.
This research supports previous findings, for example, that a diagnosis of schizophrenia often carries a harmful stigma and that the predominant biomedical model tends to plus this damage.
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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 magazine for diverse perspectives on various psychological topics1-12. https://doi.org/10.1007/s12144-024-06175-2 (Link)
