Having a schizophrenia type diagnosis for sixteen years has had a major effect on my life. It’s affected the way I think, feel, socialize, the way I exist within the world. However, I have either been working full time or in graduate school for the past twelve years since I graduated college with only a short one month break between several jobs and I live independently with a vibrant social life.
If you didn’t know I had the diagnosis there’s nothing about me currently that would indicate I am any different from anyone else in the world, because I’m not. I’m not dangerous, I’m not harmful, and I’m an upstanding citizen. This being said disclosing my diagnosis has been one of the hardest things for me to do because when doing so I’ve had friends who have left me, partners who have stopped dating me, coworkers who didn’t know how to talk to me and who treated me differently from then on, and people who were just awkward and marginalizing.
Changing the diagnostic name of schizophrenia has been a recently debated topic in the mental health world. I tend to wonder what impact it would have on my life to change the name of schizophrenia to something lighter. Thinking of the vast majority of people in my life who already know about my diagnosis, I wonder if changing the name would shift their attitudes towards the condition I’ve been through. The research indicates that changing the name of the diagnosis in Japan to “Integration Disorder” had helpful outcomes with providers and service users relationships(1) whereas the affect on family members indicated “there were no differences in perceptions of social adjustment problems or knowledge about the disorder although there was limited research on this subject. (3)”
If the diagnostic name was changed, I could see several categories of knowledge base. Being that 1 in 100 people have a schizophrenia type diagnosis I feel like there are a good portion of people in the world who at the very least aren’t aware they know someone with the diagnosis. For these people, it would give me a chance to explain to them what the new diagnosis truly meant and might help to wash away falsely preconceived notions. Within this context however, it would be difficult to explain how I’ve heard voices and seen visions of things that aren’t within the organic world and to not have these experiences termed as schizophrenia.
I also tend to wonder if at what point someone would look up the name of the diagnosis and the search engines would have indications that the newly named disorder is actually still schizophrenia, and this makes me wonder if the stigma towards schizophrenia would just be readjusted to the new term. In these instances, I tend to think the societal stigma still exists and its the stigma that needs to be addressed directly and not necessarily the names for the conditions.
If the name of schizophrenia was to be changed I wonder if stigmatizing media outlets and other discriminatory groups will swap over the new name for schizophrenia in place of the current terms. Even if they did, I still tend to wonder if they would continue with the stigmatization. Their business models have shown time and time again over the years that they’ve had the power and the ability to reduce and decrease stigma towards any marginalized group. Anyone who has a keen eye can notice that the media, entertainment industries, and marketers pay close attention to stereotypes and utilize them to identify their target audiences and many times perpetuate that stigma towards major or minor groups in ways that help them to profit. Simultaneously, they’ve had the power to reduce stigma towards marginalized groups within their mediums, which are viewed by millions daily, but haven’t done so until it has been brought to the forefront of social justice advocacy. This is something we’ve seen recently and prominently, with racial and gender stereotypes along with LGBTQ rights which has been a great thing. And I do have to note I’m glad this is happening but I want to see these social justice efforts extended to those like myself who have had psychotic disorders.
For major media outlets to stop projecting stigma into society on TV, movies, the radio, and other outlets, which affect tens of millions of people, it needs to become both financially lucrative and socially acceptable to project people with schizophrenia type diagnoses as the normal human beings we are. The name change is not going to make a difference until these major outlets, who influence global culture daily, are willing to make these changes.
Even then there would still be a tremendous amount of work to do to root out all the stigma from the minds of billions who have all too frequently been barraged with stigmatic perceptions of those with schizophrenia. Many of these false perceptions have been perpetuated by the media and entertainment industries for profit. In Asia, several countries changed the name of schizophrenia to much lighter terms and the media outlets still used the original names of the schizophrenia type diagnoses and didn’t change them during their broadcasts (2). I’m speculating, but my guess is that existing stigma played a major role in this while it also still probably seemed financially lucrative for media outlets to continue projecting stigma to the general public.
Another group I consider are the people whom I’ve known for years who have known my diagnosis the entire time. I’ve had a number of social situations over the years that have gone fairly poorly when I’ve struggled mental health wise and it’s been difficult to maintain friendships at times. With my diagnosis, I know a number of people have given me more leeway and have been more understanding just given they know I’m being affected by something I can’t always control. I think regardless of whether the name is changed, people’s perceptions towards me in regard to the nexus of social interactions we’ve had over the years are not going to change by changing the name of the diagnosis. My existence within these experiences are still associated to the terms schizophrenia and schizoaffective within the minds of these people and I don’t see their attitudes shifting towards what I’ve been through, just given we’re calling it a different name.
I also think of all the times I struggled behaviorally during my episodes of schizophrenia and how precarious it was for me and everyone in my life. If the same events were to happen with a different diagnostic label, my belief is that people would still treat me the same way they had in past years. During those episodes I had a number of friends leave me and I had difficulty working, getting a job, I had trouble taking care of myself, and I did not get along with family. If the condition was given a different name it would not change the effects of the illness that others see and I tend to believe that the stigma would just shift to the new labels.
The real shift I’ve noticed over the years with stigmatization has had more to do with how well I’m doing as a person. People might not be aware of this, but for a good portion of people with schizophrenia and other mental health conditions there’s a progression of improving mentally, emotionally, and socially. When I’m meeting new people and I reach a point of divulging my diagnosis, the reactions are much different now as I’m much healthier and much more socially adept than I was earlier on in my recovery. If I’m projecting a healthy persona to people and mention the diagnosis they are less afraid whereas when I’ve had a more precarious persona and mentioned the diagnosis, I encountered more bad outcomes socially. Even still, stigma still exists within these contexts and there are moments where I get awkward reactions, people not knowing what to say, or people start treating me differently altogether. However, when I think of this, there are always going to be people who are newly acquiring the diagnosis and the levels of stigma they encounter will also shift from day to day given how well they are feeling and interacting with others.
Finally, there are a group of people within this dynamic who would be the future. If the next generation grows up with the word schizophrenia being termed differently, there is potential to change their perceptions towards the condition. With the terms changing it’s tough to say whether people would have other ways of stigmatizing those with mental health conditions or if the same experiences that are currently labeled as schizophrenia, would just be stigmatized under a different name. Regardless of the terms, the main issue is that schizophrenia type diagnoses are still majorly marginalized and stigmatized by all of the major industries. Until some of the major influencers of global culture change their marketing and entertainment products, the way I’m treated when I mention my diagnosis to people is just not going to shift, regardless of what it’s called. The real question for me is wondering if some of the major industries who help to shape a good portion of culture in the world will step up in helping the public to realize we are just as human as everyone else and deserve to be seen and treated as the equals we are.
(1) The debate about renaming schizophrenia: a new name would not resolve the stigmaW. Gaebel1,2 and A. Kerst1,2.
(2)Lasalvia A, Penta E, Sartorius N and Henderson S (2015) Should the label ‘schizophrenia’ be abandoned? Schizophrenia Research 162, 276–284. [PubMed] [Google Scholar]
(3) (Yamaguchi S, Mizuno M, Ojio Y, Sawada U, Matsunaga A, Ando S and Koike S (2017) Associations between renaming schizophrenia and stigma-related outcomes: a systematic review. Psychiatry and Clinical Neurosciences 71, 347–362.
—
This post is republished on Medium.
—
Photo credit: Shutterstock
They did a name change of manic depression diagnosis to bi polar just about the time school shooting started to happen. Those individuals were then called bi polar. The name recognition went from bad to worse in the public’s eye. It is not about the label or public stigma. It is about the journey to wellness. Wellness, being self-acceptance. When this occurs,
the stigma’s fall from you. Peace to those that are suffering and may you have strong wings for the journey. It is worth the freedom…