By Christine Allen
Have you ever called the national NAMI HelpLine? What if I told you that your call might have been answered by Mary Giliberti, NAMI’s CEO? There’s a small chance, because Mary travels quite a lot on business—but whenever she’s in NAMI’s Arlington office, she takes time out of her busy schedule to answer calls.
“Working on the HelpLine helps me connect with our mission and puts things in perspective for me,” Mary explained. “As CEO, I deal with a lot of issues—budgets, hiring, restructuring staff. And sometimes all that can be difficult, but when you take a call from someone who’s trying to help their son or daughter who is thinking about suicide, those issues you’re working on don’t seem that difficult anymore. It brings me back to what NAMI is really about.”
Which is: help those who are struggling.
Whether we’re advocating, supporting, educating or increasing awareness, NAMI is here to help. Providing answers on the HelpLine is a core way we do that. We’re not professionals, we’re not doctors or nurses, and we don’t try to be. We’re people who have been touched by mental illness in some way and who want to help others because of our experiences.
“A big part of [mental illness] recovery for a lot of people is helping others,” Mary says. “So, we help ourselves by helping others. And hopefully someone we help will turn around and help someone else, and that person will help someone else, and so on and so on.” In that regard, the chain reaction of a single call is simply immeasurable.
According to Mary, there are two main goals of every HelpLine call. The first is to ensure that the caller receives a kind and compassionate experience. “People are treated terribly—by providers, by communities, even by those close to them. So the first goal is that the person knows that they’re not alone, and that we’re here for them.”
The second goal is to help the caller find any resources he or she might need, or to establish a next step. “I always hear people breathe a sigh of relief and say, ‘Okay, I have something to do next,’” says Mary. “Many times, when people are in these circumstances, they don’t know what to do next or what the next step would remotely look like. We’re here to help them figure out what that might be.”
The HelpLine was established with a $1 million donation from a single private donor in 1991. These were pre-internet days, when calling for information was the only form of “Googling” anyone had. Despite technological advances, the purpose and the need for NAMI’s national HelpLine hasn’t changed—but what has changed is the way we provide information (word-of-mouth/snail mail vs. the emails and webpages of today). Mary emphasizes that she believes the HelpLine is still an essential piece of the NAMI puzzle and the mental health community—because of that first goal. “Calling us affirms for people that they’re not alone,” Mary says. “I can hear callers’ voices change during the conversation from what is clearly a lot of stress and tension to feeling understood. Like there’s a place for them, like there’s a group of people who understand what they’re going through. So, yes, part of what we do is certainly providing information, but the more important piece is really listening and understanding and empathizing.”
And a website can’t do that.
I once heard a great saying from a man living with schizophrenia. He was attending a NAMI meeting full of mental health professionals, corporate representatives and scientific researchers. He stood up toward the end of the meeting and said, “I’d just like to thank NAMI for inviting me to have a voice in this discussion. I’ve found that when people living with these illnesses aren’t given a seat at the table, we often end up on the menu.”
Once HelpLine volunteers are done listening, understanding and empathizing, once they hang up the phone, they usually log a summary of the call. What did the caller need? What did the volunteer supply? Did the caller request something NAMI didn’t have?
These logs provide a wealth of data—what topics are most called about, what subjects NAMI’s website fails to address, and which holes in the mental health system consistently trip people up, among other things. When we pool the data, we get clear messages that we then turn around and use to improve our education, to advocate more effectively, to update our web content and more. That information, your collective voice, is used so we can change policy and hopefully change lives. That is what we do.
In that regard, our HelpLine is more than a place that anybody can call when they’re struggling with mental illness and they know that the person on the other end of the line is going to be kind and compassionate and knowledgeable—it’s a place where your voice will be heard. It’s a place where you can tell us problem areas that might be blindspots to us.
It’s a place where you are given a seat at the table.
For Mary, volunteering on the HelpLine has helped her do her job more effectively. Part of a CEO’s job is conveying what an organization needs and what it offers society, and taking HelpLine calls helps her “make real” for people what NAMI does. “It helps me be a more authentic voice for the people we serve because I’m telling their story and not just speaking in an abstract way,” she says.
At the end of one call, a gentleman she was speaking with politely asked, “Do you think you could get a message to someone high up at NAMI? Someone who makes the decisions?”
“I think I could do that,” Mary responded, smiling. “What is it that you’d like to tell them?”
“Well, the thing is, I don’t think Congress understands how hard it is to live on the money I have to live on. I have to make decisions every day whether I’m going to spend my money on prescriptions or food. I feel like these government guys just don’t get it; they’re talking about Social Security in the context of someone with a physical disability, and they don’t even consider mental health disabilities. And I want to make sure NAMI is aware of that.”
“Okay. I will make sure the right person gets that message,” Mary responded.
Mary told me she could give dozens of profound, jargon-riddled speeches about how copays are too high and too difficult. Or she could say, “I spoke to somebody on our HelpLine the other day who said to me, ‘Make sure you tell those congressmen that mental health care copays are too difficult, and I’m being forced to choose between food and medicine.’”
Which is more powerful?
Keep calling the NAMI HelpLine. We’re here to help, and we appreciate the help your questions provide our mission. 800-950-6264.
Christine Allen is manager of communications at NAMI.
Note: This piece is a reprint from the Spring 2017 Advocate.
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