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How to talk about your mental illness | Psyche

Photo by Aleksandar Nakic/Getty

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Guide

How to talk about your mental illness

Careful disclosure can be highly rewarding. Use tips from the Honest, Open, Proud programme to share your story

by Carla Kundert & Patrick W Corrigan + BIO

Photo by Aleksandar Nakic/Getty

Need to know

Mental health conditions come with a double burden: on top of the sadness, the anxiety or other symptoms, there is the harm wrought by stigma. Although these conditions are very common – more than 970 million people worldwide are estimated to have one – the sense that there is something shameful about experiencing mental illness can make it daunting to open up about it. Sharing details about your mental health with family members, friends or people at work or in the community can bring a measure of relief and help you receive valuable support. But it can also expose you to the risk of discouraging, unsupportive reactions from others.

Many people with mental illness internalise stigma and might agree with stereotypes about their condition (eg, ‘I have depression, so I must be weak and incompetent’). Of course, these negative self-judgments do not reflect the truth; in fact, multiple studies show that people with even the most serious mental illness often recover and, with support, are able to pursue their dreams and accomplish their goals. Despite this, self-stigma can lead to a feeling that one is ‘broken’, that negative stereotypes are accurate, that one is ‘less than’ because of their condition. This sense of shame can tear down a person’s self-esteem and self-efficacy, and it can also make someone less inclined to talk about what they have been going through.

So what should you do if you have experience with mental illness? Should you talk about it with the people in your life? While it is understandable to be wary of disclosing any personal experience that has stigma attached to it – whether it’s past trouble with the law, struggles in school, or a hospitalisation for mental illness – feeling forced to keep a secret about oneself has its costs. Research has shown that people with mental illness who believe they need to keep it a secret report greater shame and sadness. In contrast, having the opportunity to talk about your experience with mental illness has the potential to deepen relationships with friends, family members or romantic partners. Those who share their experience sometimes feel less burdened by a sense of shame about having a ‘secret identity’ and feel that they get to live more authentically. The act of sharing can also lead to emotional or instrumental support from the person you disclose to: it might be a listening ear when you are feeling down or anxious, an accommodation at work, or a connection to other people or services that can provide help.

Finally, being ‘out’ about your mental health challenge could mean that you serve as living testimony against stigma. Consider the story of Linda, a young woman who decided to share details about her struggles with mental health and her recovery journey with her supervisor at work. Linda had experiences of dissociation, derealisation and hallucinations that impacted her studies and family life. Early in her recovery, she started a job at a handicraft shop – on her first day, she was nervous and restless, so her supervisor asked if she was sick and sent her home to recover. Linda decided she wanted to share her mental health challenges to explain her behaviour to her supervisor, but she did not come to the decision lightly. After she disclosed, her supervisor showed understanding and support. The supervisor even expressed surprise that Linda had a mental health condition – suggesting that Linda was challenging stereotypes the supervisor held about mental illness just by being herself.

In short, the question of whether to disclose your experience with mental illness can be complex. And even if you do decide to talk about your experience with someone, you might not be sure how best to do it.

We and other researchers have developed and tested a peer-based programme called Honest, Open, Proud (HOP) to help people decide whether disclosure is right for them and – if the answer is yes – when, how, and with whom to talk about their experience. It is a well-studied intervention: a recent review covered five randomised controlled trials that showed benefits for stigma-related stress. Participants in these studies have had a variety of psychiatric conditions, including depression, bipolar disorder, anxiety, schizophrenia and post-traumatic stress disorder (PTSD). Studies have found that benefits of the HOP programme, adapted for specific groups, are evident among adolescents, college students, and those who have attempted suicide as well. HOP has also been adapted for war veterans, people with Tourette syndrome, dementia, autism spectrum disorder, and urinary incontinence. Adaptations of the programme are made with crucial feedback from the communities involved.

The HOP programme is conducted as a series of group sessions in which members are led by a peer – another person with lived experience of mental health challenges – through a series of discussions. There are several core lessons containing tasks, discussion questions, worksheets and group activities. The programme is influenced by two guidelines that might seem slightly contradictory, but are actually complementary:

  1. Use caution. Information that is made public can be difficult to take back, so prudence in disclosure decisions is encouraged.
  2. Delayed decision is lost opportunity. While negative reactions are an inherent risk in disclosing your mental health challenge, being overly cautious in sharing could lead you to miss out on the potential positive responses – support, care, understanding, even mutual disclosure and shared experience.

In this Guide, we will outline ways to consider whether and how to talk about your mental illness based on several steps that an Honest, Open, Proud group member would engage in. Our approach acknowledges that there is no one correct way to live with a mental health challenge. Decisions about disclosure are highly personal, and only you can make the best choice for yourself at any given time.

What to do

Consider who you might talk to about your experience

To whom might you open up about your mental health experience? If you’re not sure, think about the kinds of relationships you have and what you hope to accomplish by relating your experience. Let’s consider three ways of thinking about relationships in the context of talking about mental illness.

In functional relationships, sharing with the other person might serve a clear function. For example, a psychiatrist or clinical psychologist could be well positioned to provide you with care. Functional disclosures might also involve someone such as a supervisor or coworker, a classmate or teacher, or a fellow parent in your child’s school. Sharing could help the person understand and perhaps accommodate your needs so that you can better fulfil your role at work, at school or in your family. For example, if you experience anxiety around tests and tight deadlines, letting your instructor know might allow for an accommodation such as extra time.

Supportive relationships are those with people who will likely react positively to your experiences and might provide informal support and approval. When considering whether to disclose to someone for these reasons, look for those who are pleasant, trustworthy and open-minded and have a desire to help others. These are often people such as family members, romantic partners or close friends.

Finally, empathic relationships are those involving people who can relate to your mental health experience, at least to some degree. They might have experienced their own mental health challenges or have a close relationship with someone who has. In addition to support, an empathic relationship can offer a valuable sense of belonging or feeling understood.

Of course, people in your life might fall into more than one of these categories – these are simply to help you conceptualise your goals in sharing and identifying people who are safe to talk to. Generally, you’ll want to be cautious about sharing your experience with people who seem like they might react negatively based on their attitudes or behaviours. That includes those who have a history of being disrespectful, perpetuating stereotypes or speaking about people with mental illness in disparaging terms.

Note that there are multiple ways that you might choose to disclose – if you do choose to disclose – and that you can be as selective as you’d like in deciding with whom you’d like to talk about mental illness. Selective disclosure means sharing your story with certain individuals but not everyone. With indiscriminate disclosure, you decide not to conceal your mental health experience, even if you don’t necessarily tell everyone about it. Finally, you have the option to broadcast your experience, meaning that you seek out opportunities to share your story with others – we explore this in further detail in the Learn More section below.

Weigh the pros and cons of disclosing

In deciding whether or not to talk to someone about your mental health experience, we recommend that you consider potential pros and cons, both in the short term and the long term. Writing these down, and marking those that you find most impactful, could help with envisioning the possible outcomes of your decisions.

Imagine that Taylor is weighing the costs and benefits of disclosing her ongoing experience with depression to her new romantic partner. She maps out some pros and cons to guide her decision:

How can you identify possible costs and benefits of disclosing to someone in your life? Here are some examples of questions you can ask yourself:

  • If they respond negatively, how would that impact you? How would you feel?
  • Does this person have influence in your work, school, family or social life that might be important to consider (eg, is there a risk that they could prevent you from getting a promotion, or spread gossip)?
  • Might the person to whom you are thinking about disclosing be able to support you in some way if you want them to? What would that be like for you?
  • How might sharing with this person improve your relationship (eg, might they understand you better; would you be able to speak more honestly with them)?

Perceptions and judgments of a person’s experience with mental illness might vary, in part, based on the nature of the experience. For example, research suggests that, in some ways, experiences of psychosis tend to be more heavily stigmatised than depression or anxiety. At the same time, one might find an unexpected sense of connection through talking with someone about an often-isolating experience such as psychosis. Knowing you are not alone can be beneficial.

Pros and cons will largely depend on the person with whom you share and the context in which you share, so it could be helpful to repeat this process for each person you consider disclosing to. Importantly, this is not a one-time choice: your decision about whether to share and how you tell your story can change over time.

Test someone for disclosure

If you find that the potential benefits of sharing could outweigh the costs, at least in a specific situation or with a specific person or group, you might want to test the waters, so to speak, before diving in with your self-disclosure.

To test someone for their potential reaction to your disclosure, it can be helpful to start by mentioning an example from pop culture (such as a TV show that you both enjoy) where a person with mental health challenges is portrayed positively and honestly, or an example of such a person from recent news or history. Then ask a question that will help you gauge their response. For example:

Have you seen the show This Is Us? I really like the way they portray the depth of each character’s personality and relationships, even when things are hard. What do you think about how they show Randall’s challenges with anxiety and panic attacks? What do you think of people like Randall sharing their story? Do you know anyone like him?

Listen to what the person says. Keep an ear out for responses that seem sensitive and kind, perhaps similar to the sort of responses you might hope for if you were to disclose your experience to this person. One positive response to an example of mental illness in pop culture does not guarantee that someone will respond well to your disclosure. But it could give you a sense of how they think about mental health in general. Someone who responds with callous or unkind remarks (eg, ‘I think people like that just need to snap out of it’) is likely not the best person to disclose to.

Think about how to tell your story

Once you decide it’s time to share your experience with someone, you might want to take some time to consider what, exactly, you want to share. Keep in mind that deciding to share something doesn’t necessitate that you share everything. There is no need to disclose anything that makes you feel ashamed or embarrassed if you don’t want to.

To begin a conversation, you can ask the person you hope to disclose to if they have the time and bandwidth for you to share a personal story with them. You might even want to refer back to a previous disclosure test (eg, ‘Do you remember when we talked about Mariah Carey’s experiences with bipolar disorder? I was wondering if we could talk more about mental health, if you have the time.’)

Consider starting your story with details that will establish common ground with your listener, such as shared experiences of childhood or young adulthood (eg, ‘I was really involved in high school, acted in the school play, got decent grades, and had a great group of friends’). You might then want to share both the acute and lasting impacts that mental illness – and any stigma you have experienced – have had on your life, your goals, and maybe even friends or family. Finally, drive home the fact that, despite the challenges that mental illness and stigma have posed, you live, work and play just like your listener. This assertion is especially important because it can help challenge the stigmatising beliefs of others – that people with mental health challenges are different or less than other people.

Here are some other tips and elements worth considering to make your story more impactful and meaningful to your listener:

  • Make it personal. Use first-person language to talk about your experiences. For example: ‘I was in college when I noticed what a big impact my anxiety had on my everyday life.’ This will help the listener connect you – the person they know and have a relationship with – to your story of mental health.
  • Try to use concrete examples of your experience rather than abstract metaphors. For instance: ‘It was hard to leave my dorm room, to speak up in class, to go to the dining hall. So my health and grades suffered.’
  • Use jargon with discretion, since specialised language related to diagnoses, symptoms or treatments might not be easy to understand. Including and defining some important terms could be helpful in educating your listener. For example, you might explain that a symptom of your PTSD is disassociation, and provide a short explanation of what that is like for you.
  • Seek a balance in how you describe your experiences with mental illness, neither sugar-coating them nor describing them in overly negative terms. Be honest but tactful in conveying your story.
  • Consider your goals in disclosing – what you hope to feel, achieve or receive if you share. You may very well want to share one or more of these goals with the listener, so they know what to do with this new information. Think back to the example of Taylor, who is thinking about disclosing her experiences with depression to her partner. She might explain her goal by saying: ‘I wanted to share this so that you can better understand me, since this is a big part of who I am. My depression still impacts me, and it might come up as our relationship continues.’

It might be helpful to write out what you want to say, then review what you’ve written with an eye for points that might be especially important to you and any details you might want to exclude. Practising aloud in front of a mirror, on video or with a trusted person who already knows your story could increase your confidence.

Consider the setting in which you disclose (eg, face to face in your home, or over the phone, or in a private message on social media, etc), as this might impact how you feel and how the other person responds. Your preferences about the conversation – like having time to draft your story in writing or being able to get immediate feedback from the person after you share – might lead you to one setting or another. We also encourage you to think about time: it is important that both you and the other person have sufficient time to discuss your experience uninterrupted. Agreeing on a particular time and place to talk could help you carve out this opportunity.

Prepare for both negative and positive responses

There is a range of possible responses you might receive after telling someone about your experience – both in terms of how they feel and how they behave. Emotions such as fear or anger can lead to disrespectful comments, avoidance or denial. Empathy and positive emotions can elicit expressions of care and understanding and offers of support.

Consider how you might prepare for such responses, including negative ones. If you are disclosing to someone in the workplace, you might want to make yourself aware of your rights in the event that you face discrimination or retribution, and identify people who can provide support (such as someone in the human resources department). Negative reactions to disclosure can be challenging, so it can be helpful to have supports at the ready. For example, after the conversation you might connect with a trusted friend who already knows your story, your mental health care provider, or peers who also have mental health challenges.

Be prepared to make the most of positive responses as well. If someone offers support or assistance, you might want to take them up on it later, or politely decline their offer if it does not meet your needs. It’s possible that when you disclose, others will feel comfortable sharing their own, similar experiences – and perhaps they will even ask you for support. This could be a welcome exchange, or it could be overwhelming for you, so you might want to explore what sort of follow-up you would be comfortable with and how to communicate your boundaries. Are you open to ongoing discussions about your mental health? Are you able to provide mutual support and, if so, what kind? Having a sentence or two prepared that explains this might be helpful. For example: ‘I appreciate our shared experience, but I don’t know that I can be a regular source of support for you because these discussions can be triggering for me.’

After sharing your story, you can take some time to evaluate how it went for you. What did you say, how was it received (both in terms of what they said and how they said it), and how did you feel after talking about it? Were your goals achieved? These evaluations can inform your future disclosure decisions: will you share again, and if so, how might you tell your story the next time?

Key points – How to talk about your mental illness

  1. Mental illness is common, but it can be challenging to talk about. Stigma and the risk of a negative response might discourage you from sharing your experience.
  2. There are steps you can take to decide whether and how to disclose. The need for caution about sharing should be balanced against the potential benefits, such as the relief or support it could bring.
  3. Consider who you might talk to about your experience. Is it someone who can offer functional support or accommodation? Emotional support? Or someone who has similar experience and can relate?
  4. Weigh the pros and cons of disclosing. Think about the possible costs and benefits, both in the short and the long term. You can write these down and mark the ones that matter most to you.
  5. Test someone for disclosure. You might get a better sense of how the other person will respond to your story by asking what they think about a well-known person or fictional character who has mental illness.
  6. Think about how to tell your story. Contemplate which details you’d like to share and what your goals are in sharing. Aim to establish common ground with the other person and to make your story personal and concrete.
  7. Prepare for both negative and positive responses. You might plan to connect with outside support if the conversation goes poorly. But also consider how you’d like to follow up if the conversation goes well.

Learn more

Talking about your mental illness online

Given how much of people’s daily conversations – including those about mental health – unfold on social media platforms, you might be considering whether and how these might be a tool in sharing your story about mental health. The HOP on College Campuses (HOP-C) programme explores this topic in particular detail, as the young people who informed this adaptation noted the importance of social media in their relationships. There are different ways of sharing your story online, each with its own set of potential costs and benefits.

A private message on Facebook, Instagram, Twitter, WhatsApp or another site or app offers the opportunity to carefully craft what you’d like to say, and edit it before sharing. But compared with a face-to-face conversation (or talking over Zoom or FaceTime), some of the tone, emotional content and ways of receiving immediate emotional support might be lost. This applies to text messages, too. And private messages do not always remain private – screenshots shared without your permission can be a harmful form of gossip.

More public forms of disclosure on social media can be a very effective way of broadcasting your story. If your goal is to reach many contacts at once, a public post on Facebook, Instagram, Twitter or elsewhere is not only efficient, it can sometimes provide the welcome relief of not having to ‘come out’ over and over. Again, you can prepare and edit your story before it goes public. However, you ultimately might have little control over who sees and responds to your story – leaving the door open for potential trolling or cyberbullying.

Public disclosure, in any capacity but especially online, can have lasting impacts, both positive and negative. A digital footprint can be quite stubborn; even once it’s ‘deleted’, a public post is rarely undiscoverable, so its permanence should not be discounted. Your audience might end up being wider than expected, and a post about your experiences could unintentionally go viral. This can have career implications as well: if future (or current) employers see your post, there might be a risk of discrimination. Licensing applications for some professions in the United States (eg, physicians, psychologists and counsellors, dentists, lawyers) even ask about psychiatric history to prevent people who are ‘impaired’ by mental health conditions from holding such influential titles. Knowing about your country’s regulations in your chosen or future profession might be important in deciding whether or not public disclosure is right for you.

On the other hand, research indicates that one of the most effective ways to combat public stigma about mental health challenges is through contact – that is, interpersonal connection with someone who shares their experience of mental illness and recovery. Needless to say, the stakes are high when considering public disclosure, but the benefits can be great; it is a decision that only you can make.

Links & books

You can find more information on Honest, Open, Proud (HOP) – including manuals and workbooks, research evidence and additional adaptations – on the programme’s website.

The book Coming Out Proud to Erase the Stigma of Mental Illness: Stories and Essays of Solidarity (2015) is an anthology of the coming-out stories of people from all walks of life – tales of mental health challenges, stigma, recovery and hope.

Similarly, the book Our Stories, Ourselves: Beating the Stigma of Mental Health in Colleges and Universities (2018) shares the experiences of young people with mental health challenges, as told by the individuals living them.

In an episode of the Giving Voice to Depression podcast, Patrick Corrigan speaks with co-hosts Bridget Shore and Terry McGuire about the power of shared stories in fighting stigma.

The organisation This Is My Brave aims to ‘empower individuals to put their names and faces on their true stories of recovery from mental illness and addiction’, with platforms that include live storytelling events, short films and YouTube videos.

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25 May 2022