“We still use Facebook as a central point for discussing our pain, our successes, and challenges," said Lindsay Murphy, freelance writer for Hormones Matter. On Facebook, Lindsay shares her own battle against stage 4 endometriosis, which has resulted in four surgeries.
“Many of these women have had to have multiple surgeries, so Facebook communication has become a way for women to fact-check their doctors. Everyone is communicating about what is done during treatment. We’re sharing so many things, including treatment protocols, what doctors are saying during appointments, and how we’re doing day to day.”
Murphy insists that this forum is forcing consistency in the industry.
The strength of Facebook is its familiarity, so it is easy to refer patients. Its weakness is that unlike HerStory, the content is not screened, so there is a potential for misinformation. Still, it remains a strong resource for support.
Recommending Facebook communities that are condition-specific, such as EndoSisters.org, can be helpful for support. However, patients must fact check the information using credible medical sites and, most importantly, with their doctor.
Public Health Resources / Community Support
Health care providers today simply do not have the time to provide the kind of emotional and community support that many patients need. Offering resources to communities that can provide more in-depth support is a way to show patients that you recognize a need that you are sensitive to but that you personally are unable to meet. In addition, visiting these sites can offer insight into the patient experience beyond what you see in your practice.
Han Le, MD, a consultant for HerStory and other technologies, points out that each physician is coming from an intellectual level, not a peer-group level.
“Many physicians are very good at providing counseling for their patients, but patients still gain a lot of insight from being able to connect with others. Those shared experiences allow them to speak on a peer-to-peer level."
She adds, “It’s tremendously helpful to physicians to be able to recommend a safe, secure community where patients can share their collective wisdom. It means that a physician is able to help arm patients with the best tools that they can turn to, even when the physician isn’t available.”
Directing patients to resources that allows them to tell their story and that can offer them the emotional support that they need goes a long way in the healing process. It also lets patients know that you do empathize and understand that their diagnosis goes well beyond the clinical.
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