Hi, Family. Let Me Tell You About My Mental Illness.
It can be scary and challenging. How to have the conversation, and what to expect.
When Hanah, a 28-year-old woman living in east coast Canada, was 23 years old, her life finally began to make sense to her. After years of being diagnosed with depression and generalized anxiety disorder, labels that didn’t really seem like an accurate description of the extreme emotions and destructive behaviors that had drawn her to therapy in the first place, she finally received a diagnosis that felt like it fit: borderline personality disorder (BPD). “When someone finally put a name to it my immediate response was relief,” she says. “I wasn’t going crazy and there was actually something behind how I was feeling.”
Getting this clarity was exciting for Hanah, and she wanted to share the news with her loved ones — specifically her mom, who she’d long been close to. “She knew I’d been struggling with my mental health so when I finally had a diagnosis I was really excited to tell her,” Hanah says. “She’d been with me the whole way so she was the very first person I told.”
But instead of being supportive and sharing in Hanah’s excitement at finally finding a diagnosis that fit, her mother responded with confusion and denial. Her first reaction was to dismiss the diagnosis as wrong “because I’m not violent, crazy, or angry like ‘those people,’” Hanah says. When Hanah went through the signs of BPD — which can include extreme mood swings, unstable relationships, impulsive or risky behavior, and intense fear of abandonment — pointing out all the ones that described her, her mother insisted that she must be confused.
Having known someone else with the disorder, someone who didn’t remind her of Hanah at all, Hanah’s mother couldn’t reconcile what she thought she knew about borderline personality disorder with her understanding of her daughter. And though she finally came around to accepting her daughter’s diagnosis, that initial reaction created friction in their relationship. “It was definitely a sensitive subject for a bit,” Hanah says.
For many people, getting an accurate mental health diagnosis can be a transformative and even thrilling experience. After years of suffering, you’re finally given a framework that helps you make sense of what’s going on in your head, as well as a path towards managing your mental illness and hopefully finding relief. In my mid-thirties, I received a diagnosis of obsessive-compulsive disorder (OCD); like Hanah, that diagnosis gave me a sense of clarity and self-understanding that had evaded me for decades.
It’s not necessarily that family members aren’t willing or able to support a loved one with a mental illness. Sometimes, they’re just not mentally or emotionally prepared for the news of a diagnosis.
After getting my diagnosis, I was eager to talk about it with the people close to me. Understanding myself as a person with OCD helped me process so much of what I’d struggled to understand — why seemingly minor issues unsettled me and set me off balance, why I had so much difficulty moving past small problems, why I was plagued with upsetting thoughts that triggered my anger. I assumed that opening up about my diagnosis would give my loved ones a similar sense of clarity, and put my behavior, and my recovery, into context.
The National Institutes of Health (NIH) reports that nearly one in five adults lives with a mental illness. Given how common mental illness is, opening up about one’s struggles shouldn’t be that big of a deal. But, like Hanah, I learned that loved ones don’t always respond to a disclosure of a diagnosis the way the person disclosing might hope or expect — an uncomfortable reality that can alienate people with mental illnesses from one of the strongest links in their support system. Where I’d expected my loved ones to be interested in my diagnosis, I found they were more often dismissive or uncomfortable. The productive dialogue I’d hoped for frequently turned into my feeling embarrassed about oversharing, as though in explaining my diagnosis I was boring everyone with trivial information that only mattered to me.
It’s not necessarily that family members aren’t willing or able to support a loved one with a mental illness. Sometimes, they’re just not mentally or emotionally prepared for the news of a diagnosis. “You may have sat with the idea of what it means for you [to have a mental illness] for a long time. [But] someone you’re sharing it with may have no idea what [that diagnosis] means,” says Boston-based therapist Jenn Brandel, LICSW.
If the person hearing the disclosure only knows about mental illness from TV or movies, or, like Hanah’s mother, has had experience with someone with an extreme version of the diagnosis, it may be hard for them to reconcile what they know, or think they know, about mental illness with what they know, or think they know, about their loved one. A 2017 survey conducted by researchers at Michigan State University found that ignorance about mental illness is widespread; other research, including a Kaiser Health tracking poll from 2013, has found that stigmatizing attitudes about mental illness are also common.
A family member who incorrectly assumes that mentally ill people are violent, dishonest, or unstable may have trouble aligning that image of mental illness with a person they love. And that disconnect can lead to feelings of discomfort, which many people manage with avoidance or outright rejection.
Other times, an unwillingness to accept a relative’s diagnosis is a misguided attempt to protect someone we love. “For a lot of parents, it’s difficult and very painful to see our kids suffering,” says Brandel. “There’s a part of us that just doesn’t want that to be the case.” Shutting down conversation about a mental illness, or refusing to believe that the diagnosis is correct, might be a way of attempting to will away someone’s distress and suffering, as though refusing to acknowledge a diagnosis means it doesn’t actually exist, Brandel explains.
But even when these reactions are coming from a place of love, they can still do real damage, both to the person disclosing their mental illness and to the person’s relationship with their family. In order to avoid a painful or traumatic disclosure experience, Brandel advises being thoughtful and intentional about who, and how, we share news of our mental health with.
“There’s a mixture of what [a person] may get from disclosing,” Brandel says, noting that it’s rarely all good or all bad. Before opening up about a diagnosis, it’s important to think through a variety of possible outcomes — both positive and negative — to assess whether you feel equipped to handle the risk that comes with sharing a diagnosis with a loved one.
Brandel also recommends figuring out what your motivation for disclosing is, and what you hope to get out of telling your family about your mental health. For some people, the urge to disclose comes from a desire to be known. In other cases, it’s an attempt to put past behavior into a larger context.
Still others want to share their diagnosis because they see their family as an essential part of their support system, a role which requires having a full picture of their health care needs. Family support is frequently cited by mental health organizations and research as an essential component of mental health recovery. Being open and honest about your mental illness is often a precursor to benefiting from that support.
Whatever the reason, determining your motivation can help you to ascertain what you really want to disclose, and how much of it. It can also help you assess the likelihood of experiencing your desired outcome. If, for instance, you’re hoping that telling your historically unsupportive and emotionally family about your diagnosis will inspire them to suddenly become warm and comforting, chances are good that you’ll find yourself disappointed and hurt.
On the flip side, if you are a family member hearing the diagnosis, it’s important to be aware of the impact your reactions can have on your loved one. Rather than immediately indulging an initial reaction, whether it’s surprise, shock, disbelief, worry, or something else entirely, Brandel recommends that you take a beat to acknowledge how you feel and then turn your attention back to your loved one and their immediate needs.
“When someone first discloses, I think the important thing you start with is, ‘Thank you for sharing that with me, I bet that was really hard,’” Brandel says. If you need time to process your feelings and acclimate to the news, it’s okay to put the discussion on pause, telling your loved one, “I need a little time to sit with this information, but I’d love to talk more about what your diagnosis means for you soon.” (While Brandel encourages openly talking about how the news makes you feel, she cautions against sharing those feelings with the person who’s just disclosed the diagnosis — better to turn to other friends than burden someone who’s feeling vulnerable.)
When you’re ready to continue the conversation, Brandel recommends asking questions and reflecting back what you’re hearing, taking the time to really listen to what their diagnosis means for them and how it integrates into their life, rather than assuming you’re already an expert on your loved one’s mental health.
“Fear and misinformation get in the way of people understanding [mental illness],” Brandel says. Too often, that fear and misinformation can prevent people with mental illnesses from getting the support they need. Opening up about your mental health to family and loved ones can be an opportunity to combat that misinformation — but getting to a place of understanding can take time and patience for everyone involved.