The money quote, for me, is: “Sorry, but when did proselytizing one’s unsolicited cure-all become OK?”
Sara gets at something we all deal with as Health Activists and members of online health communities–there are always people out there trying to push their cure.
Sometimes this happens in obvious ways, a snake-oil salesman (or woman) trying to sell their panacea. Sometimes it comes from the people we least expect–well meaning friends or family members, convinced if we would just give X (yoga, vitamins, the newest drug, you name it) a try, then our health problems could finally be resolved.
I tend to think that most of the time, all these people mean well. They’ve found something that has worked for them, and they want to spread the word; or they read something somewhere and want to make sure that we know about it too. As annoying as that can be, it’s still a pretty well-intentioned gesture.
What I think gets to be so hard about this unsolicited advice (and I think Sara really hits the nail on the head in her article) is that we, as patients, are somehow, subtly, responsible for whatever health conditions we’re living with. Whether it’s Rheumatoid Arthritis, as Sara discusses in her article, fertility issues, migraines, mental health, food allergies, or another health condition, even the most well-intentioned advice can imply the patient is to blame. I think this only adds to the unnecessary shame that many people feel over their health issues and can actually do more harm than good.
Thinking about all of this leads me to two questions:
How do we, as Health Activists, encourage people to seek out the care they need, without reinforcing any ides of blame or shame?
How do we, as Health Activists, respond to unsolicited advice, whether it’s directed at us, or towards fellow members of our online communities?
My personal take is that this sort of advice is most appropriately shared when it’s been asked for. I’m generally content to ignore any unsolicited health advice that’s thrown my way, but it’s also important to me that others feel confident they can participate without being bombarded with advice they may not need or want.
What have your experiences been? How do you answer these questions?