Midnight Friends: How Wired Patients Are Transforming Chronic Illness



By Nell Lake
Guest contributor

Over the years, I’ve watched my cousin Deborah Haber struggle with several chronic, painful medical conditions, including fibromyalgia and a rare incurable disorder called Ehlers-Danlos Syndrome, a connective tissue disease that causes profuse sweating, a high heart rate and insomnia, among its many symptoms.

Largely housebound, and managing the life of her 11-year-old daughter, Deborah faces social isolation and persistent pain.

But along the way, my cousin has discovered a lifeline that’s lifted her outlook and improved her health. It combines the best qualities of a mother, best friend, therapist and trusted doctor to help her cope: it’s social media.

Deborah, 39, used to lie awake at night with “agonizing, shooting nerve pain,” feeling helpless and alone. She began going online, where she found others who were also awake and in pain; they became her midnight friends. “When you cannot sleep,” she says, “and you know your kid’s going to be up in a couple of hours, and you’re going to have to get her to school on time,” even if you’re exhausted — “knowing that you are not alone is a life-saver.”

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

Early on in her social media journey, Deborah mostly used Twitter. It was through people she met there that she learned about Ehlers-Danlos syndrome. She talked with her doctor, who did her own research and sent Haber to a specialist, who diagnosed the rare congenital disease. Deborah’s online activity, then, led directly to the diagnosis, which led to “far better care.”

Clearly, Deborah’s not alone: she’s part of a large and growing group of people with chronic illness in the U.S. who are using the Internet and other online technology to take charge of and improve their own health. This goes far beyond Googling your child’s weird rash: these millions of “empowered patients” are joining social-media communities, consulting online health databases, learning and sharing knowledge about drug side effects, crowdsourcing research studies, electronically monitoring their health and becoming health care activists who share what they’ve learned with their doctors.

Online patients with chronic illness use social media to improve both mental and physical health and to better connect with an understanding community, says Jennifer Covich Bordenick, chief executive officer of eHealth Initiative, which published a study earlier this year on patients’ social media patterns.

“It’s really incredible, if you look at what social media is allowing patients…to do right now,” she says. “It’s providing tremendous access to support, information, and it’s connecting people in a way that they haven’t been able to do before. … People with chronic illness are more motivated. … There’s an urgency there.” Continue reading

What To Watch Out For When Meds Are Discussed Online

The good news: The Internet reaches many patients who are otherwise isolated, and can draw them into helpful communities. Online patient forums are booming on the Web, helping millions connect.

The bad news: Those otherwise isolated patients are also the most vulnerable to biased information that may be propagated online by, say, companies hoping to sell more of their drugs.



That worries Dr. Harold J. Bursztajn, co-founder of the Program in Psychiatry and the Law at Harvard Medical School, an expert in clinician-patient decision making, and a researcher on the pharmaceutical industry’s financial influence on psychiatry. He has served as an expert retained by the plaintiffs in Seroquel-related lawsuits. He has also served as an expert retained by the defense in other pharmaceutical liability lawsuits. He recently gave a talk at the University of Haifa Faculty of Law on the dangers of online marketing of psychiatric drugs, and kindly agreed to help convert it into this guest post combining warnings and tips for the general public.

Dr. Harold J. Bursztajn (Courtesy of HJB)

Readers, have you seen any examples of biased information about prescription drugs in ads or the online patient communities where you hang out? Please share in the comments below.

What to watch out for:

Buried risks — In their official information about medications, some companies may bury the information about risks very far down on the first page, in small print, or a click or two away. For example: this advertisement for Seroquel SR that comes up when you Google depression.

The more the risks appear on your laptop screen or your smartphone on the same page as the benefits, the more likely you’re being given the straight story.

Hidden industry ties — On some online forums, ranging from psychopharmacology listservs for clinicians to consumer groups, members give personal recommendations about drugs without mentioning their industry ties. It is best to trust recommendations from people who explicitly state that they have not had any industry ties rather than people who omit mentioning anything about such ties. In fact, it may be safer at times to trust people who explicitly say they do have industry ties rather than omit any mention of such ties.

Indirect tiesContinue reading