What do you say when someone tells you about their mental health diagnosis?

papijack in the sun

There are plenty of pieces out there, I’ve found, about what not to say. (Example: Do not tell a person experiencing clinical depression to “get over it,” or to “snap out of it.”) But less common are the pieces that advise us on what’s in the right ballpark.

Listen to me read this piece here:

 

A friend of mine had recently been diagnosed with an illness — the reaction to which I was able to pseudo-witness in the Comments section of her Facebook updates. During a conversation with two lovely young women, held in an alcove of San Francisco’s Makeshift Society, I recounted one particular response that had me absolutely livid.

For privacy’s sake, I will not recount the actual statement here; regardless, I considered it to be both ill-informed and bone-headed. But what the women told me — with a sweet matter-of-factness that underscored how surprised I was by their reaction — was that they, too, would not know how to respond to being told of a friend or acquaintance’s mental health diagnosis.

There are plenty of pieces out there, I’ve found, about what not to say. (Example: Do not tell a person experiencing clinical depression to “get over it,” or to “snap out of it.”) But less common are the pieces that advise us on what’s in the right ballpark— and so I turned to my peers. I asked them, many of whom are living with chronic illnesses, including mental health diagnoses, what they would appreciate in response to such a disclosure.

I do want to say one thing before I get into the nitty-gritty: it is scary as all get-out to reveal a psychiatric diagnosis (or diagnoses). I’m an advocate. I speak in public about my personal experiences with schizoaffective disorder and PTSD. And yet if it looks like we might become pals, or if I’m meeting you at a conference and I find myself disclosing my diagnosis to you, I can almost guarantee that I’ll walk away from that conversation feeling anxious.

Which makes it all the more important to aim for the following. Even if there’s no capital-R Right way to do this — akin to, I believe, there being no capital-R Right way to comfort the grieving — I still believe that there’s value in learning from the experiences of others.

three smiling people, a bearded man, a blonde asian, and a young woman

Thank us for telling you.

Part of my anxiety about disclosure is that I fear having intruded upon you in some way — as if you’re going to go home and rue the day you met me, because now you have to deal with knowing this thing that I know all the damn time.

If it’s a recent diagnosis, tell us that our choice to seek the professional help that resulted in that diagnosis was a mature, brave one.

Because it is, and because we often feel that we should have done a better job of “toughing it out,” or “dealing with it on our own.” (Katharine Tillman.)

Validate that what we’re going through is real and hard.

Catherine Shu says this beautifully: “What I want to hear,” she says, “is some validation that what I’m going through is real — as in, so real it’s been scientifically validated — and extremely difficult. Just, ‘You are doing the right thing by taking care of yourself,’ means a lot.”

Why is this important? Because we often wonder if we’re making a big deal out of nothing. Sometimes, people are actively in our lives, telling us that we are making a big deal out of nothing.

You might say, “Taking care of yourself is the right thing to do.” Or, if you’re in a position to go for the simple route, “I’m sorry to hear that.”

Trust our ability to navigate our own experience, including the fact that we’ve chosen to identify with the diagnosis being shared.

This is a tricky one, and not even so much a “thing to say” as an “attitude to take” — but, imminent bodily harm notwithstanding, we’re often told that we don’t know what’s best for us. For some well-meaning folks, that may include saying things to us such as, “I don’t think you have depression-depression — maybe you’re bummed because of the weather!”

We are coming to you with a disclosure about our identity, and identities are by nature very personal. Please respect that, just as you would respect other sorts of identity disclosure.

On a similar note, we may be choosing to take medication. You may have strong feelings about that. “I support you in any step you take toward healing,” however, is an indicator that you understand the importance of agency. (The same, by the way, goes in the opposite scenario. Not everyone chooses to take medication.)

Depending on your relationship with us, your support (and props) in acknowledging that we are on a healing journey can be enormously helpful.

“I’m really proud of you for taking care of yourself, ‘cos that ain’t easy, and you’re doing such a good job.” (Mabelle Bong)

If you’re in a position to do so, and believe it to be true, please vocalize the fact that you’ll stick by us.

You know those people who never say, “I love you,” because they assume that it should be obvious? Yeah.

Feel free to ask us what we need.

This applies to other life-altering events, as well, but living with a mental health challenge often means that we might need help. We might need someone to make sure that there’s something edible in the fridge. We might need someone to make the trek to pick up prescriptions. We might need to be listened to. Maybe we need a distracting movie, complete with cornball performers who make fart jokes. “It’s okay not to know what’s needed,” JSA Lowe says. “You’re not a clinician or a guardian angel. It’s okay to check in repeatedly, and keep offering support and assistance and love.”

If we say that no, we don’t need anything, don’t be afraid to ask again. It doesn’t have to be in the five minutes after the initial query, but I found that it took years before I took anyone up on an offer of help. And there’s also the possibility that, in a situation when we’re disclosing because we’re not in a good headspace, we won’t be able to come up with what we do, in fact, need, in which case — depending on your relationship with the person — JSA adds, “come over, put in a load of sheets, put on a dumb TV show, take out the recycling, make and serve a cup of herbal tea, smile and offer a hug, and quietly leave.”

Enormous, enormous thanks, again, to everyone who commented and contributed on this topic — and a personal thanks to everyone whose responses to my disclosures helped me to feel safe, heard, and seen.

Other pieces that relate to support and mental illness: Schizophrenia in India, & the Strength in Belonging; One Life, One Pair of Hands. I’ve also updated (and added a little video to!) the informational page for my new e-book about living well with mental illness, Light Gets InSo honored by the feedback I’ve received thus far.

Have you had experience with disclosing a mental health issue? What were some helpful things that people said to you? What do you wish people had said to you?

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  • This is a beautiful piece and I love that it gives people wisdom from those on the inside and that it is framed in a positive way. It’s true that we can be easily hurt by the wrong words and it is equally true that most of us don’t even really know what the “right” words might be. This provides a helpful framework. For me, I cringe when, after disclosing, someone relates a story that suggests we all have bad days and so my illness is just akin to a bad day. I have worked to become mindful though, that usually what that person is trying to do is to connect to me and my experience. I think it is important for me to recognize that sometimes what feels callous or ignorant is someone’s clumsy way of trying to reach out.

    • Ah. I can definitely relate to the people-trying-to-relate-with-a-sort-of-similar-story thing. It’s definitely important, as you said, to recognize that people are trying their best. Which is usually the case — people are trying to do their best with what they have available. I just hope that pieces like this one can help folks to do a different kind of “best.” Thanks for visiting/commenting. x

  • Thank you so much for writing this article. I was just in a conversation last night in which I expressed my deep feeling that I need to embody my truth, which means coming out of the closet about my 15-ish years of Panic Disorder and depression. For a long while after I recovered (which I totally did), I wouldn’t even think about my panic, lest it bring on a panic attack. Little by little I started to speak about it with friends, but not family. Recently, I ‘came out’ about my disorder by including it in my bio. There were mixed reactions– some very positive and some people letting me know that I gave them too much information and they really didn’t need to know about that.

    It’s a tricky subject and I totally know the feeling of being anxious about revealing the truth. I get anxious that people will see me through the filter of my disorder and will attribute my thoughts, behavior, actions, etc to the panic and depression. It’s an ego thing, I know, but I’m still sensitive to it.

    I appreciate you being so open about who you are and your mental health diagnosis.

    All the best,
    Mira

    • Yes to embodying your truth! Panic attacks are awful — and thank you for sharing a bit about your recovery journey here, as well as your journey regarding sharing that journey with others. Interesting re: the reaction to you including your mental health situation in your bio. How, exactly, did people tell you that you gave too much information? It strikes me as odd that people would deliberately reach out and take the energy to say something like that.

      And YES to getting anxious re: “people will see me through the filter of my disorder” — I write about that at great length in my book, especially as it applies to how I dress and present myself (I’m very careful about clothing and appearance).

      Thanks so much for stopping by & sharing. xE

      • Hi Esmé,
        Thanks for replying! To answer your question, I had a drop in attendance in my classes and asked students if they knew why. They said that students had been talking and we’re turned off by my ‘coming out,’ saying that I was giving out too much info….So, sort of second hand reporting, but I don’t have reason to disbelieve those who told me.
        Voilà. That’s the story…..
        -Mira

        • Oof. If that was indeed true, I’m sorry. It sounds as though you’ve moved through that, but those sorts of things, for me, still leave bruises. It’s funny how people decide what is and is not “too much information.”

  • I am frequently quite open now about having bipolar and people have different reactions and say different things. It surprises me still when people don’t know what it is and I have to explain. Quite a few people talk about depression and having suffered themselves or about knowing someone who has and I do find this empathic, even though part of me wants to get competitive about it and tell them mine’s much worse. Some people tell me I’m very brave to talk about it. In general I find most people at least try and that’s good.
    Although there have been times when I’ve wished I hadn’t said anything at all and that’s because people have just ignored it. I think I prefer some response, however clumsy, to none at all.
    Thank you for writing about these topics Esme, I’ve never read a blog about mental health before.

  • This is such an important, fraught, complex topic which you have handled with your usual gentleness and grace, Esmé. Your words remind me of something I read recently by Kate Richards, author of Madness: A Memoir. In her latest book Is There No Place for Me: Making Sense of Madness, she writes that for some people living with mental illness “the most important thing is to find someone who listens. Someone whose presence says, Do you want to tell me about it? We can sit and talk. We can just sit. I’ll sit here with you and hold you in this space and I’ll listen because I care and I won’t let go of you until you’re ready to walk in the world again on your own.”
    I aspire to be such a person as this, who sits with others and talks, who sits and doesn’t talk, who holds space for those in need and who does not let them go until they are sure that they’re ready. I aspire – although sometimes it feels harder – to be like this with myself too.

    • Hi Caitlin,
      Thank for sharing this excerpt. Yes, this is exactly what I wanted when I was in the black hole of panic and depression– someone to hold sacred space for me. It changed the way that I listen to others, as I am truly conscious of holding space for those who need me to do that for them. But I totally agree with you that it’s harder to offer myself the same kind of attention!
      -Mira

  • This post was so truthful and eloquent. I am still struggling with finding support a year after my diagnosis of bipolar II. I relate to so much of this. Esme, you definitely expressed this feeling far better than I ever could. Thank you for your honesty, bravery and talent.

  • This is a wonderful post. I’ve had people – new acquaintances, potential partners or friends – just quit on me, when I told them, so I’d like to stop that from happening. (Well, either that or I have a truly appalling personality that shows within a few hours. Hmm.) I tell people because it’s such an integral part of my life that otherwise I’d feel I’m cheating them somehow. Also I take a sh*tload of pills all the time, so it’s very apparent I have a condition of some kind. And some of them are just like, “Severe depression you say? Well, bye!” It’s very disheartening.

  • Thank you:)
    When I went off work on sick leave for “Stress” I wish I had received a get well card and maybe flowers from them. This upset me because I always signed and contributed when cards went around for my sick colleagues.

    I am now being treated for depression with the mind and body approach. A psychiatrist for my body and a therapist for my mind. I am a changed person. I am more positive than I gave ever been.

    A year ago I though of starting a Fundrsiser for mental health. In our first even this year we raised $8,752. Our Facebook page has crossed the 100 like mark!

    I am always on the lookout to share articles like this with our followers.

    Once again thank you.

  • I don’t mind sharing my condition, Bipolar II, with others much at all. It sometimes comes up in casual conversation about why I’m so anxious, paranoid, or sleep funky, or why I’m so concerned about my 10 year old’s mood swings.

    I just wish some people didn’t look at me like they’ve seen a ghost when I mention it. I’m not making a pronouncement. I’m not asking for your pity. I’m not dying. We can get on with our conversation. And, if you have questions, I’m kind of an open book, so go ahead and ask.

  • Expressions of love and non-judgement have been my favourite. Some of family can only seem to provide rational advise when my depressive states overcome me, assuming that logic will somehow be useful for a truly irrational set of behaviours. But my roommate responds with hugs and they are just the best.

    • I love that. Yes–sometimes I don’t want to be “fixed,” either. Sometimes I just want a hug. Hug therapy.

  • I love these suggestions.

    The one that resonates so much is trusting me to know myself rather than thinking you know what’s right for me. You don’t know better than my doctor, or more importantly, me. This isn’t the time to sell me something. Your essential oil, face cream, or shake isn’t the magic bullet to cure what’s been ailing me for 20 years. Don’t prey on me when I’m being vulnerable with you.

    I have both a mental health disorder and a recent fibromyalgia diagnosis. This also applies to chronic illness. Since disclosing I’ve been questioned about using medication (so I can literally get out of bed), and what took me so long to get help (um, doctors didn’t believe me and diagnosis is hard w/this disorder). However, those are better than silence. That’s just about the worst. Even a clumsy response is better than nothing. Even better is when they get vulnerable and tell me they don’t know what to say, which generally leads to more intimacy and a deeper relationship.

    I do love it when people are curious about what’s happening for me. I don’t mind the questions, finding it sweet when they want to know if it’s ok to ask questions. I’ve been telling friends one by one suggestions like this but now I’m going to share this article so they know how to respond. I know this post is two years old but I’m just finding it now. Thank you for posting it again on Twitter Esme. I found it at the perfect time.