Health

Her Pain Was Their PR

For Stow resident Erica Johnson, having breast cancer was a terrifying, harrowing experience. For her employer, it was marketing gold.


Illustration by Benjamen Purvis

Erica Johnson couldn’t contain the emotion that came over her as she rang the ceremonial bell marking the end of her cancer treatment, sobbing, her head in her hands, as the staff at Newton-Wellesley Hospital embraced her. It had been the scariest year of her life: a breast cancer diagnosis at age 41, followed by 16 rounds of chemotherapy in five months, then surgery, 20 radiation treatments, and 13 rounds of immunotherapy after that. So when the final day of her treatment arrived, she made sure her husband, Trevor, was filming her as she rang that bell. Later that day, she sent the video to a couple of friends at work to share the good news. When one of them asked if they could share it internally with other workmates, she said yes.

Three days later, on a Sunday morning, Johnson received a notification that she had been tagged on the LinkedIn page of Renaissance Alliance, the MetroWest insurance agency network where she had been working as a placement marketing specialist for the past two and a half years. She was shocked by what she found: the video Trevor had filmed of her on her last day of treatment. There she was, wearing a gray T-shirt with “It’s a wrap” in breast-cancer-pink lettering on the front and a pink ribbon on the back, her newly grown-in hair cropped close to her head, sounding the bell. The video had been up on the site since the day she had texted it to her friends, and already had more than 500 likes, Johnson says.

Johnson didn’t care that it was a Sunday. Crying, she grabbed her phone and called her boss and the director of human resources. The HR director, according to Johnson, said that she, too, was surprised to see the video posted, but had assumed Johnson had given permission to the company.

Johnson got off the phone and typed her name into the Google search bar. What she saw horrified her: There on her screen were her name and photos from when she was undergoing treatment and had lost all her hair, not only on her employer’s public-facing Facebook page, but also attached to their consumer insurance blog, as well as to Glassdoor, a website where current and former employees review their workplaces. The pictures of Johnson had been there for anyone to see for about 300 days.

As Johnson scrolled, she saw photos of the time she stopped by work during treatment to pick up her T-shirt for a cancer walk. Then there was the time she participated in a cancer walk with her coworkers and someone wrapped a pink boa around Johnson’s neck, while someone else took a photo. In all of the images, her illness was on full display. “My bald picture was everywhere,” Johnson says. “Like, Look at our sad, bald employee. It had to have been the worst moment of my life.”

By now, everyone has heard the warnings: Be careful what you post online, lest a current or potential future employer see something that could ruin your career. But what happens when it’s your employer who is doing the posting, reducing your most private and personal pain to a small piece of the company’s marketing strategy, and ruining your life in the process? Johnson was about to find out.

Johnson thought she was in perfect health when she had her first routine mammogram. She’d just gotten engaged to Trevor, a funny, sweet guy who found her taco obsession charming and loved her dog, Lucy, as much as she did. The doctors flagged something on the scan, but they were confident it was nothing, especially given that she had no family history of breast cancer. Still, the doctors suggested she come back in six months for another scan to be sure.

Johnson was so sure it was nothing, just as the doctors said, that she scheduled the appointment for June 2017, just hours before she and Trevor were heading to Maine to elope. On the way out of town, with her bags packed for a wedding and a honeymoon, she stopped at Newton-Wellesley Hospital for her scan. “All the nurses caught wind that I was getting married the next day. So they brought roses into the ultrasound room,” she says. “It was the cutest and oddest thing that has ever happened.” Back at work after her honeymoon, she got the dreaded news: She had breast cancer.

Johnson is petite with a blond pixie cut, a warm face, and an easy smile. She loves animals, loves to exercise. People like her. She was, it seemed, too young to get cancer. But even though she had the face, the demeanor, and the story to be a perfect poster child for breast cancer awareness, she never wanted to be one. “When I was diagnosed, I said, ‘I don’t want to be the spokesperson for the Susan G. Komen foundation,’” she says. “Some people do. And I think that’s awesome. But there are a lot of people who don’t.”

Johnson tried hard to keep working at her normal pace while going through treatment—she loved her work, she was good at it, and it provided a welcome distraction. She continued to go into her office in Wellesley Monday through Wednesday and work remotely from the cancer center at Newton-Wellesley Hospital on Thursday, taking her laptop into the infusion center while they pumped her full of healing chemicals. She’d be so wired from the treatments that she’d work all night Thursday from her home in Medway, where she was living at the time. Her midnight emails to colleagues became a running joke. “I almost overcompensated,” she says. “I wanted to make sure that I didn’t make any mistakes. It was really important to me that I did well and that I didn’t let [having cancer] affect my professional life.”

Even still, in the early part of her treatment, Johnson says her employer asked her to take medical leave, or else start using her sick and vacation time, which the company said was likely not enough to cover the four to six hours per week of treatments that could go on for several months. Medical leave would cover only a portion of her pay. Johnson says she told her employer that she was working during her chemo—she shouldn’t be missing any time—and that she’d been working all night long on Thursdays, too. “And they said, ‘Oh, we didn’t realize that.’ And I said, ‘Well, have you been getting complaints from agents or something?’ And they said, ‘No, but [HR feels] that it’s important to set precedent,’” Johnson says. “‘So we have some sort of framework going forward if this happens with somebody else.’” (In court papers, Renaissance Alliance has denied that it asked Johnson to take medical leave.)

Johnson thought it was unfair: Surely there were coworkers who logged fewer than 40 hours a week for one reason or another but weren’t penalized or made to leave—but she decided that taking a break would be better than fighting to stay. After all, she says, “Everyone else in the cancer center was knitting or reading a book or watching TV, and I’m clicking away, more stressed because I want to make sure I’m doing well. So, at that point, I just decided: Forget it. If it’s going to be this way, then I’ll just go.”

During her treatment, Johnson contacted Renaissance HR to let them know she was participating in a fundraising event through the hospital, with proceeds to go toward programs (and sandwiches) for cancer center patients and their families. She hoped to get permission to email her colleagues to ask if they might want to donate or attend. Johnson says that’s when she found out that Renaissance was organizing a team in her name for a local cancer walk. She also learned that her employer had already designed T-shirts that she says had the company logo on them and read “Erica’s Entourage” and, in a nod to Johnson’s love of pickles, “She’s a pretty big dill,” alongside a picture of a pickle. An announcement stating that the company was participating in the “Making Strides Against Breast Cancer of Worcester fundraising walk in honor of one of our employees…. #GoPink #EricasEntourage” had been posted to its public Facebook page.

“I told HR, ‘I’m very touched. It made me teary that the people I work with thought nice enough of me to be supportive,’” Johnson says. “But afterward, I said to my husband, ‘This is uncomfortable.’ But when someone’s like, we really want to be supportive, how do you say I don’t want you to be. Please don’t be supportive?”

Even though Johnson had mixed feelings about the company participating in the walk—which she says had been organized for her without her knowledge or consent—she was worried about seeming ungrateful. So she picked up the shirt and attended the walk. For its part, Renaissance Alliance has said in court papers that the walk was planned with Johnson’s “encouragement and approval.”

There is no question that cancer, and in particular breast cancer, is a marketing goldmine. For one thing, it’s very relatable—one in eight women will be diagnosed with breast cancer in their lifetime, making it the second-most-common cancer affecting women in the United States. “It’s very likely that everyone knows someone that has been personally affected, whether that’s an immediate family member, a friend, or someone that they’ve worked with,” says Jayla Burton, the program officer for Breast Cancer Action, a watchdog organization that focuses on what it calls a takeover of the disease by corporate giants and charities that use pink-ribbon marketing culture for their own benefit. “It’s a disease that has a lot of personal touch to it. Pink-ribbon marketing campaigns or fundraising events are made to seem as if they care about breast cancer patients, when in reality, it’s just a boost to their reputation.” In fact, any company can put a pink ribbon on their products in October, which is Breast Cancer Awareness Month, without any guarantee that it will make a single donation to breast cancer charities.

Bolstering a corporate profile through breast cancer marketing is no longer solely the domain of Fortune 500 firms. In the age of social media, smaller companies can get in on the action as well with whatever “content” they have on hand. James Wu, a labor and employment attorney with the law firm Quarles & Brady, says companies often use employees’ personal stories in their marketing, especially if they are feel-good stories—and it’s hard to beat surviving cancer. “A good marketer will tell you that a good story is key in engendering the sort of emotional connection a company wants with a marketing campaign,” he notes. “But I tell clients, ‘Don’t share anything about your employees unless you get written consent from them. And before posting, give that employee a chance to look at what and how you are sharing and sign off on it.’”

Johnson never signed off on the use of her story on social media, she says, but even some employees who do aren’t necessarily completely comfortable with it. Pink-ribbon campaigns, says Gayle Sulik, author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health, work because they prey on both society’s and survivors’ fears and vulnerabilities and desires to do good. “It’s a very feel-good-oriented approach in which there’s this idea that any awareness is good awareness and any activities for the cause must be completely good,” she says.

As a result, a lot of women feel pressured to wear the pink ribbon, both literally and figuratively. Johnson is far from alone in the discomfort these unsolicited efforts created for her. “I’ve heard women say, ‘People are doing stuff for me, and it makes it hard to say no,’ because of this overwhelming goodness associated with all things breast-cancer-awareness-oriented,” Sulik says. In fact, a lot of the people Sulik has spoken to have told her that when the disease gets co-opted by these awareness events they feel like, “I don’t even exist anymore. I’m just the icon for this thing that other people have taken hold of.”

Of course, there’s been a collateral benefit to breast cancer awareness, and that’s actual awareness. Breast cancer has been a driving force behind making women’s health a priority, Sulik says. “The disease was destigmatized, and a solidarity was created among some groups of women. It created this status of, I’m not a victim, but I’m a survivor,” she says. “And it did move more money into medical research, a lot more money. It also moved money into a lot of other things that have nothing to do with breast cancer.”

Certainly, it’s easy to wonder: If Johnson had suffered from a rare skin disease or hepatitis C, would Renaissance have so readily made her affliction public in the name of goodwill and team building? Probably not. Sulik suggests that if companies want to do something for their sick employees, they should do something for all sick employees—not just those with breast cancer. “There’s house cleaning for breast cancer survivors, massage for breast cancer survivors,” she says. “And then this person with melanoma says, ‘Well, I could use some help with my housecleaning, and I could use some childcare. And you know what? I have fibromyalgia and I can’t really take care of my kids all the time.’ People suffer in so many ways. And so if companies really wanted to get at what’s happening with their employees, they should ask, where do they need help? How can we really be supportive?”

The Monday after Johnson saw the video of her ringing the bell on LinkedIn, she went into the office. No one apologized or said anything to her at all, she says. At one point, she burst into tears. “We had a rule that there was no crying in the office, so I left,” she says. “My boss called and said, ‘You have to come back,’” Johnson says. “I said, ‘I don’t want some bullshit apology, because they don’t mean it. This was done purposely. This was absolutely strategic. They picked my bald picture to put up and they put my name all over it and they’ve let my entire livelihood network know that I have cancer.’”

The two people in marketing who were responsible for invading her privacy, she says, were forced to apologize but fought her when it came to taking the photos from the walk down. She says one of them told her, “If it’s any consolation, the video got more ‘likes’ than any post Renaissance had ever posted to LinkedIn.” Then they were promoted, Johnson says. Renaissance Alliance’s lawyer said the company did not wish to comment due to the pending litigation, but in court papers the company has denied this and many of Johnson’s other allegations.

Johnson no longer felt comfortable at Renaissance, but she couldn’t quit—she needed the paycheck, and the health insurance—until she found a new job. So instead, she continued to show up for work every day even though it made her miserable to be there. “I know it sounds so dramatic, but it ruined two years of my life,” she says. “I cried every day on my way to work. It had a huge role in my marriage. You go from a fairly bubbly, positive person to a very negative, crying, depressed, unmotivated, just sad about everything, angry person. And I didn’t know what to do, because what do you do?”

Over the next two years, she applied for countless jobs, but couldn’t get hired, despite her 20-plus years of experience and glowing recommendations. No one would even call her back. At one point she told Renaissance’s director of HR that she was having trouble finding a new job. According to Johnson, the director responded, “Let’s be honest, Erica—no one wants to hire the girl who just had cancer.” Renaissance Alliance has denied this in court papers.

Newbury resident Todd Jacobsen had a similar experience. He worked at a company that gave him a hard time about taking time off to attend medical appointments for a yet-to-be-diagnosed condition. They even accused him of faking it. After he was diagnosed with leukemia, however, the company named him “Survivor of the Year” as part of fundraising work it did with the Leukemia & Lymphoma Society. He was so fed up with the way his company was treating him that he started to look for a new job, going on numerous interviews. “With some employers I told them, straight up, that this is part of the reason I’m leaving my company, just to gauge the response,” he says. “And the response I got was very supportive. But none of those turned into offers.”

For her part, Johnson finally got a new job in the summer of 2020. In November, she filed a lawsuit against Renaissance Alliance for interference with privacy, intentional infliction of emotional distress, and negligent infliction of emotional distress. She’d like compensation. But just as much, she’d like recourse. “Companies hold the cards,” she says. “You sign all these agreements, and you’re expected to hold yourself to a certain caliber whether you’re in the office or not in the office, you’re on the road, whatever your job is, 24 hours a day. People have gotten fired for posting something on Facebook that maybe a company finds not appropriate. But they can do something so violating and completely exploit you?” In its response to Johnson’s lawsuit, Renaissance Alliance disputes much of her account, and has broadly denied that it invaded her privacy.

The bottom line, Johnson says, is that there have to be rules. There has to be an agreement. “There has to be some acknowledgment that a company makes to an employee to say, you know, just because you work for us doesn’t mean we own you,” she says. “I’m not sure that exists right now. It didn’t for me.”