About one in every 300 people in the world live with schizophrenia, but stigma and misconceptions have led to a need for change to improve quality of life and outcomes for people with the condition.
Schizophrenia affects around 24 million people around the world, but the condition is frequently misunderstood, leading to stigma and negative perceptions. This is something that Hal had to work through after his own diagnosis of schizophrenia.
“When I was 16 I was taken to hospital because I had quite severe obsessive-compulsive disorder which is now actually quite well controlled, but whilst I was in hospital I began to hear voices which worsened over the next 18 months or so and led to me being sectioned,” shares Hal. “I was diagnosed with paranoid schizophrenia but I had an incomplete response to medication at first. Since then I’ve gone back on the medication Clozapine and my diagnosis has now changed to treatment-resistant schizophrenia.”
At this time, Hal had to come to terms with his new diagnosis and the treatment of the condition, but now he is more accepting of living with schizophrenia.
“Being diagnosed is scary, it’s really scary, but what has changed my life is I’ve had effective treatment, so the diagnosis doesn’t feel quite as scary anymore,” enthuses Hal. “Pretty much everyone I’ve worked with has been excellent.
“It’s allowed me to be able to go back to work and studying quite intensely, whereas before I had no motivation so I feel like it’s been the key to getting to education. The medication and the social impact I’ve had from my team has been exceptional.”
Through finding the right treatment, Hal has also been able to better accept the diagnosis and challenge his own negative perceptions.
“At first, I hated it and I was embarrassed and ashamed I suppose,” admits Hal. “What I’ve learned is that it’s nothing to be ashamed of: it’s something that is a medical condition that can be treated, I always think of it a bit like a beast that can be tamed.
“My initial response to being diagnosed was what society almost enforces about the perception of schizophrenia, but when you look at the many people who have good lives and aren’t dangerous, reducing stigma is so important.”
Alongside finding medication that works for him, Hal has also felt empowered by the work of different organisations reducing this stigma. After seeing multiple posts on social media about National Schizophrenia Awareness Day, Hal was able to find information from mental health charity Rethink Mental Illness.
“I have felt tremendously empowered by Rethink Mental Illness, looking at the work they’ve done and information they’ve put up around psychosis awareness,” shares Hal. “They’ve helped me a lot in the fact that I feel a lot more comfortable talking about things. I suppose I was ashamed of the fact that I’m ill and that I’ve got this, but now I know it is treatable.”
The awareness day takes place on 25 July 2022 and is hosted by the charity, helping to shine a light on the challenges faced by people with a diagnosis of schizophrenia and raising the profile of the need for change.
While examining his own biases, Hal is now advocating for greater awareness to help change perceptions of Schizophrenia. Without this, the treatment of people with the condition in all areas of society will continue to be unjust.
“I think what we need to really do is talk about schizophrenia, all of us, we need education; we need benefits reform; we need early intervention; we need change happening top and bottom,” demands Hal. “People need to listen to those with experience and people need to learn about medications and feel confident taking them, not feel like it’s a shameful thing.
“I think so many patients are sedated instead of treated and the crisis management is so patchy around the country, but I really do think that society is quite capable of making this change.”
To fully address this stigma and increase awareness of the condition and the support available for people, sharing people’s lived experience is essential.
“That really needs to be shared across as many mediums as possible and people need to understand that stigma needs to be challenged because it isn’t a life sentence,” offers Hal. “If we talked about it and explained that it doesn’t have to be a debilitating illness, then I really feel like it would change people’s perception.”
This shift is happening, but too slowly to create a more positive environment for people who live with the condition or are currently receiving a diagnosis.
“EastEnders had a storyline about schizophrenia recently and it was really good, really well written and it was a good way to talk about it I think,” expresses Hal.
“It’s such a challenging perception to change, but the process humanises all of those with the illness.”
Through events like National Schizophrenia Awareness Day and people like Hal sharing their story, perceptions of schizophrenia are changing, but more has to be done to better support people with the condition and ensure they don’t feel shame after a diagnosis.
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