Hi, my name is Dr. Tracy Hicks. I am a mother, a friend, an educator, a mentor, a wife, a psychiatric healthcare provider…among many other parts of my identity. How I introduce myself is an important element of how I view myself and how the outside world views me.
My experience with schizophrenia is both personal and professional. As a clinician, I work with people living with serious mental illnesses (SMIs), such as schizophrenia, and have helped many navigate their diagnosis and treatment journey. In my family, I am a care partner to my father, who lives with schizophrenia, and my daughter, who lives with schizoaffective disorder, bipolar type. I have seen firsthand the challenges they face each day. These combined experiences have taught me crucial lessons about identity and stigma.
As a society, we often define people living with SMI by their diagnosis. For example, we use stigmatizing language like “they are bipolar” or “they’re schizophrenic.” But just as I am not defined by one aspect of my identity, a person living with SMI should never be defined only by their diagnosis, and the illness they live with should never be the first or only thing we see when we look at them.
Stigma often begins externally, shaped by societal attitudes and the ways mental illness is portrayed in social media, television, and through other cultural vehicles. Over time, repeated exposure to these negative stereotypes can lead a person living with SMI to internalize them and begin applying those beliefs to themselves. This is known as “self-stigma.”
Someone living with schizophrenia may begin to believe that they do not belong, that they are broken, or that they are incapable of having the life they once imagined. In my experience, self-stigma can be even more insidious than stigma coming from the outside world because it erodes self-confidence. By the time someone sits in front of a healthcare provider, they may already be minimizing what they believe about themselves. One of our jobs as providers is to challenge that self-stigma and help them see who they are—all the varied and dynamic parts of their identity—and who they can become with the right support.
Language Can Either Reinforce Stigma or Help Dismantle It
Stigma can show up in healthcare in ways that are not always easily recognizable; one of these ways is in the language we use. Guidance developed both by the National Alliance on Mental Illness (NAMI) and with people who have lived experience of schizophrenia emphasizes that language can either support dignity and engagement or make someone feel labeled and misunderstood. The guide also emphasizes the importance of individual language preferences and diverse term acceptance (1).
For example, think of something as simple as the word “patient.” While the word is widely accepted in clinical contexts, what does it communicate more broadly? Might it automatically place that person in a submissive or passive role? Could it focus all the attention on that person being sick or suffering? Is there a chance it could take away their agency or power? For all these reasons, I prefer to use the word “client” to emphasize that people are coming to me for a service I provide. I may also say, “the people I serve” or “the person I serve.” As providers, we provide a valued service. Some may like these terms, and some may not—there is never going to be one word that everyone will prefer, and that’s okay! We have to remain curious and open about how people want to be spoken to and spoken about.
That same principle applies to the concept of person-first language. A diagnosis describes only one aspect of a person’s experience; it is not and should not become their identity. Saying “a person living with schizophrenia” rather than “a schizophrenic person,” for example, keeps the person, and not the diagnosis, at the center of the conversation.
In addition, when considering a client who is having trouble taking their medication as prescribed, using terms such as “noncompliant” or “nonadherent” can shut down a conversation before it even starts. Labeling someone in this way suggests that they are making a deliberate decision not to take their medication—it assigns blame and likely puts them on the defensive. The reality is that there are many reasons why someone may not take their medication as prescribed: they may not like the side effects, or their illness might tell them they don’t need medication, for example. Instead, consider asking what is stopping them from taking their medication—and then really listen to their answer. By exploring the issues that may be impeding the treatment plan and looking for ways to address those concerns, the provider can communicate a desire to understand the client’s perspective and, together, find solutions.
Most importantly, listen without judgment. Providers typically only have a few minutes with their clients, but if even part of that time is centered on asking what’s been going on, what is working or not working, and what their goal is for that day’s visit, the client is more likely to leave feeling heard, respected, and cared for.
Treatment Should Create Ownership, Not Reinforce Shame
How we work with clients to develop a treatment plan can also challenge self-stigma or reinforce it. If care follows a paternalistic model — namely, “I am the provider and I am telling you what to do” — the client may feel that their voice has little value. This can reinforce the stigma they have already assigned to their condition and themselves. Shared decision-making is different.
As a provider, it is my job to explain, based on what a client has told me about their symptoms and health history, which options I think could work for them. It is also my job to take that a step further and ask what my client thinks about those options: Do they have questions? Concerns? When clients are invited into these decisions, when they are heard and their opinions are valued, they feel that they have a role in shaping the plan. This sense of ownership can make care feel more collaborative and personally relevant, which may help clients stay engaged with the plan over time.
The distinction between telling a client what is right for them and sharing in the decision-making process becomes particularly important when discussing, for example, misunderstood medications like long-acting injectable (LAI) antipsychotics. Historically, LAIs carry their own stigma as they are perceived as the medication suggested only after someone has “failed” to adhere to their oral medication or as a last resort for the most serious cases. That framing can reinforce stigma and prevent clients who may benefit from these medications from fully considering them as an option.
I never want an LAI to sound like a punishment. I want to present LAIs as an opportunity. As an example, for some people, remembering to take a pill every day can be a burden and become a daily reminder of a diagnosis they are still learning to accept. An LAI may remove some of these challenges while providing stability over time.
Keeping the Person’s Goals at the Center
Families mean well. I know this personally. However, in an effort to protect a loved one, family members may unintentionally make decisions for them or communicate that certain goals are no longer realistic because of their diagnosis. Even when those actions come from a place of concern, they can reinforce the idea that the person is less capable of advocating for themselves because they live with schizophrenia.
Rather than leaning into behavior that could feel overprotective or micromanaging, families and care partners can help counter self-stigma by supporting the person’s own goals, encouraging appropriate independence, and recognizing progress along the way. This can help challenge the internalized belief that schizophrenia determines what someone is capable of or what their future can look like.
As providers—and even as care partners—we also tend to become so focused on symptoms, medication, and clinical outcomes that we forget what our clients and loved ones want their lives to look like. And because goals are different for everyone, we can’t forget to ask: What is most important to you? For one person, the goal may be employment. For another, it may be living independently or going back to school. At one point, my daughter’s goal was simply to go to dinner and travel with our family again. Whatever the goal, our role as part of the care team is to help people, in whatever ways we can, reach their goals.
Self-stigma is a complex and insidious phenomenon, and helping reduce it in clients and loved ones can be equally challenging. However, there are ways we can help. Reducing self-stigma requires more than telling people not to feel ashamed. It requires providers, families, care partners, and communities to look carefully at the healthcare environments, family conversations, and cultural messages surrounding them. It also requires us to take an honest look at whether we are creating psychologically safe spaces where people living with SMI feel able to speak openly about what they need and want.
As providers, we should be able to tell someone living with schizophrenia that people with this illness can live meaningful lives—and make sure the way we communicate and deliver care reinforces that message.
Everyone has stories. Our responsibility is to make sure a diagnosis never becomes the only story we see.
Dr. Tracy Hicks, NP, DNP, MBA, APRN, FNP/PMHNP-BC, CARN-AP, FIAAN, FAANP, FAAN, is a care partner and the Founder and CEO of C-Trilogy Outreach, a nonprofit mental health and primary care clinic in Texas.
References
National Alliance on Mental Illness. (n.d.). Schizophrenia & psychosis guide: Care, advocacy, and engagement.www.nami.org/research/publications-reports/guides/schizophrenia-psychosis-guide-care-advocacy-engagement
