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Breaking Biases And Overcoming Stigmas
How 3 Surgical Patients Became Online Patient Advocates In The Bariatric And Breast Cancer Communities
With more than four billion people around the world now using the
internet, and around half of the planet on social media, there has never been a time in history when more people could connect.* We look to others online for advice, recommendations, opinions and solutions to problems to pretty much everything imaginable.
Johnson & Johnson MedTech (JJMT) has a strong commitment to ensuring that patients have access to information about its products and how those products may help address health issues patients may be dealing with or want to better understand. Educating the patient so that they can make informed decisions about their care is the purview of the medical team. This includes connecting, supporting and further empowering the online health advocate community, particularly in key disease states that we’re working every day to address. One of the ways in which JJMT is leaning into this effort is through the HealtheVoices program, a partnership with Janssen and JJMT to bring together online health advocates and patient bloggers to learn, share and network with others.
Meet three remarkable women, and participants in HealtheVoices, whose healthcare journeys inspired them to become advocates. Now they’re using their platforms to spread awareness and bring together communities online.
As a single parent who worked two jobs and went to school full time to earn her master’s degree, Shenese Colwell spent so much time caring for others that she hadn’t taken the best care of herself. Overweight and unhealthy, she saw her graduation as a turning point.
Shenese recalls walking across the graduation stage and saying to herself, “This is going to be the beginning of my life.” She made the decision then and there to begin the next chapter “in the best shape possible, looking the way I wanted to look and feeling like I really had it all together.”
She decided that bariatric weight-loss surgery was the direction she wanted to go, but knew almost nothing about it. Her doctor at the time was opposed to it, tried to talk her out of it and suggested she see a dietician or nutritionist and go on a diet.
She also got little support from family and friends. “They weren’t supportive at all,” she says. “I think obesity is still something people don’t want to acknowledge as a disease. I think it goes back to the stigma and the bias – people think that it’s something you can control.”
Shenese turned to online forums and communities for information and support. She wanted first-hand information about others’ journeys and experiences with bariatric surgeries. It was hard to find, but eventually, Shenese had the information she wanted. “I got the good, the bad and the ugly, and it helped me make a very informed decision.”
After her surgery, Shenese thought it should be easier for people like her to find out what was truly involved in having bariatric surgery and the life changes that follow. She was inspired to share her own journey and became an online advocate.
“What motivates me to be an advocate to the weight-loss surgery community is the people who start this journey without enough information to know what they’re getting themselves into,” she says. “They just want to lose weight and they’re unprepared for the body changes and obstacles they’ll face after the surgery.”
Today, Shenese helps weight-loss surgery clients reach their fitness goals and offers support for their lifelong journeys as the owner of L.A.B. Work & Fitness, a blogger and an online advocate. She has been a guest on HealtheVoices radio and attended the HealtheVoices 19 Conference.
“The most rewarding aspect of working with the weight-loss surgery community is being able to reach people and change their lives. To be able to change their outlook on bariatric surgery. Or touching those people who are at a point of discouragement or are frustrated with the journey.”
For Jeanine Sherman, it was her primary care physician who suggested she was an excellent candidate for bariatric surgery. She began searching the internet for information and support groups but wasn’t finding exactly what she needed.
“During that time, what I found was that the stigma and the bias surrounding bariatric surgery was pervasive,” says Jeanine. It would be three years before she decided to have the surgery. “When I finally made that decision, one day I just woke up and said, ‘This is it.’ And I just decided that I was going to feel really good about it.”
After surgery, she met Dr. Paul Davidson, a bariatric psychologist, and many others on Twitter who discussed issues related to health. She was overwhelmed by the number of friendships and connections she made with other patients and within the medical community.
Then one day a thought struck her, “I am a bariatric patient. Here’s a hashtag I could create that’s a statement,” she says. With that, the #iamabariatricpatient hashtag was created, which allowed her to take her health advocacy to another level.
“I think social media offers an amazing platform,” says Dr. Davidson. “It has a multiplicative effect in which you can get messages out to so many people. People feel like it’s the patient who’s to blame. They’re not. Most of the individuals we see carry guilt and shame and changing this is what Jeanine is about.”
Jeanine’s goal with #iamabariatricpatient is to tackle the stigma that surrounds obesity and bariatric surgery so that no patient must feel shamed or silent.
“What’s important to me with advocacy in the bariatric community is better access to care,” says Jeanine. “I’m so inspired that so many patients have trusted in me to share their journey. I look forward to helping people find their voices and changing the stigmas and biases.”
While Terri Coutee faced a wholly different health issue, her journey to becoming a patient advocate was similar to those of Shenese and Jeanine. It was the second time Terri was diagnosed with breast cancer that she had to make complex decisions about surgery. Fortunately, her surgeon told her that mastectomy wasn’t the only option — she should also consider breast reconstruction surgery.
“When she brought up breast reconstruction, it was almost a joyous moment for me in that really dark moment of having the diagnosis,” she says. “And for her to give me all of my options… I had no idea what they were. Had she not brought that up to me, I don’t know if this whole journey would have been as positive and as powerful as it was.”
In addition to her doctor, Terri’s support system included her family. “Shared decision-making was definitely part of the caregiving,” she says. “Listening to me, asking questions, not judging, respecting my preferences and decisions. That dialogue made it that much easier for me. I felt so supported.”
After her recovery, Terri wanted to give others the kind of support that made her feel confident with the decisions she made. “It was important to help others facing the same issues,” she says. Terri began sharing what she had been through and offering the kind of non-judgmental support she felt so lucky to have. Seeing what a strong advocate she was becoming, Terri’s surgeon suggested she start a foundation so that she could reach even more people and talk about the topic.
“I knew nothing about social media when I began my patient advocacy. But, I began sharing my story,” she says. “It is so important to connect with those who are doing the latest in research and surgical procedures, and then you can begin to share across all of the channels.”
Terri’s use of various social media venues to support other breast cancer patients and share what it is that can help them to become their own best advocates is her purpose realized through her patient advocacy.
For Shenese, Jeanine, and Terri, sharing their stories and building an online community has connected them with others in ways that they never could have imagined. As they share their stories with their peers around the world, they're excited about the opportunity to educate and empower others to learn from their own journeys.
“When I can connect patients to wonderful surgeons, patients to patients so they can speak to each other, or if I can find someone for them to talk to — that just inspires me every day to continue my advocacy work. And to continue to let others know they’re not alone in this. We all learn from each other, and that’s the beauty of it,” Terri says.
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