Key takeaways
- Sharing your experiences with schizophrenia can lead to increased understanding and support from others, helping you feel less isolated.
- Deciding who to tell and how much to share about your mental health is a personal choice that should be made on your own terms, considering both the potential benefits and risks.
- It’s important to prioritize your comfort and set boundaries when discussing your condition, and to seek support from mental health professionals or advocacy groups when needed.
Schizophrenia is a chronic condition that requires ongoing treatment and support. Treatment can lower the risk of relapse, although relapse can still happen.
Talking with others about your condition may help you feel less alone as you manage it. It can also make it easier to get emotional support and practical help, including support during a potential relapse.
“By disclosing a diagnosis of schizophrenia to others, you will open the door to being understood and can enlarge your support system,” Armond Collins, MD, a psychiatrist at Northwell Health’s Northern Westchester Hospital in Mount Kisco, NY, told Healthline. “This means those around you can offer more informed and appropriate help when needed.”
When you share your condition, some people may respond with understanding and support. Others may have misconceptions about schizophrenia or need time and education to better understand the condition.
“Stigma remains a major hurdle for people to disclose any mental health diagnosis to others,” said Collins.
Sharing information on your own terms can help you weigh the potential benefits and risks of talking with others about your condition or mental health experiences.
Read on to learn more about why these conversations matter and how to approach them.
If you have schizophrenia, talking about it with others can help them better understand the challenges you’ve faced. These conversations may also increase the support you receive or feel from people around you.
Sharing personal experiences, along with accurate, fact-based information about mental health, can also help reduce stigma.
Mental health stigma refers to unfair beliefs and attitudes that can negatively affect people living with a mental health condition.
Your mental health history is personal, and you can choose whether, when, and how to share it.
There can be both benefits and risks to talking about your mental health. Sharing information on your own terms may help you navigate those possibilities more thoughtfully.
It can also help you maintain a sense of control over your personal information, comfort, and safety.
Some people find it helpful to share their mental health experiences with family members, friends, or people at work or school. Others choose to tell only a few trusted individuals.
As you think about who to tell, consider whether certain people in your life need to know in order to offer support. Are some friends or family members better listeners or more reliable sources of help than others? Those individuals may be good people to start with.
If you feel unsure about telling someone, it may help to journal about your thoughts and feelings or make a pros and cons list. This can help you reflect on the potential benefits and risks.
A mental health professional can also help you think through these decisions.
They may offer guidance on starting conversations, setting boundaries around what you share, and preparing for the different responses you might receive.
Telling family or friends
Family members and friends can play important roles in your recovery with schizophrenia. Talking with them about your condition may help you feel less alone and can also help them better understand how to support you.
“Because recovery in schizophrenia requires the individual and their village’s engagement, it is beneficial to inform this village,” Anna Costakis, MD, MBA, Director of the Psychiatry Residency Training Program at Staten Island University Hospital, told Healthline.
You may choose to talk about your condition with some family members or friends but not others.
“It’s perfectly acceptable to disclose on a ‘need-to-know’ basis,” said Collins. “With friends and family, this will likely depend on the level of trust and safety you have with each person.”
If you decide to share your diagnosis, it can help to be clear about your preferences. Let people know whether you want them to keep that information private. “Remember to share your disclosure preferences with your loved ones, so that they can best respect your privacy,” said Collins.
Telling people at work or school
Some people choose to share their condition at work or school to access accommodations that help them manage it while meeting expectations for their role, schedule, and responsibilities.
“If a person with schizophrenia needs special accommodations, such as intermittent breaks in a working environment, they should share their [condition] with managers as early as possible,” Keming Gao, MD, PhD, an adult psychiatrist at University Hospitals in Ohio, told Healthline. Gao noted that you may choose to disclose your condition specifically or refer more generally to having a mental health condition.
There are potential benefits and risks of telling co-workers about your condition, he said.
On one hand, sharing information may help co-workers better understand how you think and behave at work. It can also make it easier for them to accommodate your needs or know how to respond if you experience a mental health crisis.
On the other hand, some people hold misconceptions about schizophrenia or feel uncertain about working alongside someone with the condition. They may have concerns about the condition itself or about the accommodations you’ve received.
You may choose to tell someone you have a “mental health condition” or are experiencing “mental health challenges” without naming a specific condition. Or you may choose to share that you have schizophrenia specifically, so people can understand your particular symptoms and support needs.
You don’t have to share everything at once. Spreading information across multiple conversations can give the other person time to process what you’ve shared and allow you to gauge their response before deciding whether to say more.
It may also help explain some of the specific challenges you experience and suggest ways the person can support you.
Let them know what you need from the conversation, such as whether you’re looking for advice or simply want them to listen.
People may have questions about your mental health.
Answering some questions and sharing fact-based information can help others better understand your condition or experiences. It may also help challenge stereotypes and misconceptions about schizophrenia.
But you don’t need to answer every question you’re asked.
You have the right to set boundaries and decide which information you want to share.
Answering questions you’re comfortable with
Learning about your condition can help you manage it and answer questions from others.
You might find it helpful to bookmark or print out information that can help you answer questions about schizophrenia and explain your experiences. Here are some helpful online sources of information:
You can also ask your mental health team to share resources for learning about schizophrenia.
When a question feels too intrusive or uncomfortable
If a question makes you uncomfortable, it’s OK to choose not to answer.
“Consider phrases to shift the topic or tone of the conversation,” said Collins, “such as, ‘We all have our struggles, but we’re so much more than that,’ or, ‘I appreciate your interest, but that’s a conversation I’ll save for my doctor.’”
You may also find it helpful to pause the conversation to process your feelings or think about how you want to respond. If needed, you may choose to revisit the conversation at another time.
“If the questions feel intrusive or make the individual feel uncomfortable, that is a sure sign that there needs to be a pause,” said Costakis. “This should not be an interrogation, but a knowledge exchange. If one side is feeling uncomfortable, it’s time for the knowledge exchange to take a pause until the person with schizophrenia can regroup and [explain] to the other person what it was that made them uncomfortable.”
“This can be an opportunity to educate the person asking questions, [but] only once the person with schizophrenia feels comfortable and safe again in the exchange,” said Costakis.
If you’ve been diagnosed with schizophrenia, attending regular mental health checkups is a crucial part of your ongoing care.
Contact your doctor or psychiatrist if you notice possible signs of a relapse, such as changes in sleep, behavior, mood, or thinking. It’s crucial to let them know if you think you’re experiencing treatment side effects.
You can also reach out if you have questions or concerns about telling others about your condition. They may share tips or resources to guide conversations about your mental health. They can also help you cope with stigma or negative reactions from others.
Connecting with a mental health advocacy organization or joining a support group may also help. “Consider connecting with a national group such as the National Alliance on Mental Illness, which can direct you to in-person and online support groups to find out how others with similar experiences tackle these conversations,” he said.
Your mental health history is personal. You get to decide whether to share it, who to tell, how much to share, and which questions you want to answer.
Before talking with someone about your condition, you may find it helpful to journal your thoughts and feelings or make a pros and cons list. Sharing can lead to greater understanding and support, but it may also carry risks, such as stigma or negative reactions.
A psychiatrist or another mental health professional can help you navigate these conversations. They may offer guidance on setting boundaries, choosing what to share, and coping with other people’s reactions.
Connecting with a mental health advocacy organization or support group can also provide information, encouragement, and strategies for navigating difficult conversations about mental health.