Scrolling through Dr. Nadia Chaudhri’s Twitter feed, her more than 150,000 followers could see a small window of her life with terminal ovarian cancer: a sun-lit photo of her son eating a mango, a funny tweet about the heart-shaped sticker used to prevent bedsores, the much-retweeted thread from September chronicling her symptoms and eventual diagnosis.
Chaudhri, a neuroscientist and professor at Concordia University in Canada, passed away last week at the age of 43, leaving behind a community inspired by her candid discussion of her experience with a terminal cancer diagnosis and her push to spread awareness so others could recognize their symptoms early.
“Know your bodies. Pay attention to fatigue and changes in bowel/urinary tract movements. Make sure you understand all the words on a medical report. Do not dismiss your pain or malaise. Find the expert doctors,” she wrote.
But for many people with chronic illnesses, rare diseases or other conditions, social media provides a space to learn and connect with others, even those who live thousands of miles away.
Stacy Hurt, a healthcare advocate, patient consultant and stage IV cancer survivor, said social media can encourage patients to advocate for themselves and persist in finding a diagnosis.
“White coat syndrome is still alive and well. Many patients are still intimidated by clinicians and are afraid to speak up for themselves. But definitely as a patient, you know your body the best,” Hurt said. “And you should always trust your gut feeling, your intuition to keep pressing on until you get the answers that you deserve.”
Hurt was diagnosed with early-onset colorectal cancer in 2014. Symptoms can be overlooked or undertreated when colorectal cancer develops at younger ages, so the community built online can spur patients to seek answers when they’re dismissed, she said.
The U.S. Preventive Services Task Force recently lowered the recommended age to begin colorectal cancer screenings from 50 to 45, which Hurt argues happened in part because of patients voicing their concerns on social media.
“It was definitely the patient voice out there, in addition to advocacy organizations meeting with the policymakers and the decision makers, but it was definitely the patient voice across social media, pushing for that change. No doubt,” she said.
Social media also provides an outlet for patients to connect with others who have their same conditions.
“I’ve seen time and time again the benefit that social media can have in connecting people,” said patient advocate Grace Cordovano.
“Whether it’s a person living with a rare disease, who thinks that there’s no one in their community, in their county, in their state, in their country, to be able to connect with someone, perhaps even on the other side of the world, with the same diagnosis and start to forge a relationship, start gathering information and really learning on the fly, to try to get up to speed with this new diagnosis.”
When Hurt was diagnosed, she connected with two other stage IV colorectal cancer survivors, one who lived in California and the other in Hawaii, far-flung places from her home in Pittsburgh.
“I got in touch with them via social media. I found them in a support group. And I direct-messaged them, each of them, and I said, ‘I want to do exactly what both of you did,’” she said.
“And that’s what I did. I wanted their playbook. And I followed each of their playbooks to the letter. And here I am today, and I give both of them total credit.”
Hurt’s son has a chromosomal disorder so rare that he’s one of three known cases in the world. But thanks to a connection through social media and email, Hurt was able to contact a woman in England whose daughter has the same condition.
“The fact that I was able to connect with the second of the three cases in the world, in England, is incredible,” she said.
Although that connection can be valuable for people with chronic illness or rare diseases, misinformation is still a threat for those searching for information on social media. COVID-19 has garnered plenty of attention on that front, but cancer is also a target for the potentially dangerous spread of false information.
A study from the Journal of the National Cancer Institute found 32.5% of the most popular articles on common cancers posted on social media contained misinformation, and 30.5% contained harmful information. Of the articles with misinformation, nearly 77% contained information that could potentially hurt a patient.
This is one area where providers and care teams can step in to help, Cordovano said. Providing newly diagnosed patients with good sources can help them find information while keeping their guard up for bad information.
“I think one of the things that we do the worst job of is connecting people to credible information. People, for example, will leave a doctor’s office and physicians and their care teams won’t connect people to the basic, credible information. Who are some advocates? What are the nonprofits? What hashtags should you be looking at on social media? How do you network? What is a trusted entity?” she said.
“I think we’ve seen a lot of great resources arise to address disinformation and misinformation and how the general person in the lay public can identify things. But we have a lot of work to do.”
Hurt encourages patients to share information only with credible links attached and to hold others accountable when they see sketchy info being shared online.
“If I see a piece of information without a proof source, I’m calling it out. And I’m saying, ‘Where did you see this? Where did you hear this? Is this anecdotal? Or is this from the literature?’ And we have to keep doing that to preserve the integrity of the information,” Hurt said.
COVID-19 has drawn a lot of attention to misinformation, but it’s also forced many, especially the immunocompromised, to stay home and connect virtually. But that experience was true for many people before the pandemic too, and Cordovano said that may level the playing field, making virtual meet-ups and connections an easier-to-access option.
“Many people with chronic illnesses, with life-altering, life-limiting diagnoses and disabilities and rare diseases, often do have to be very cautious,” she said. “They do have to worry about their health, they do have to stay home, and are unable to travel to conferences or to their physicians’ offices because they are so sick or limited in some aspects by their treatment or their condition. So many said, ‘Aha, welcome to our world. We’ve been ignored, and our unmet needs have been ignored for so long.’”
As an immunocompromised person with caregiving responsibilities, Hurt said virtual conferences and support are a must going forward. Social media and online spaces also allow patients to more easily get access to big-name figures like popular doctors and influencers, so their messages can spread.
“If a tweet can help save a life, there’s nothing better than that,” Hurt said. “That’s what we’re all here for. That’s what it’s all about, saving lives.”