Patients deserve the best and safest care. That's it. That's all. I have been on twitter for over 10 years. And my message hasn't really changed much. But I have grown immensely. When I was diagnosed with RA (rheumatoid arthritis) in 2008, I wasn't really prepared. I was pretty active and went to the gym regularly; the thought of being diagnosed with chronic disease never crossed my mind. But it happened.
Like many others, I had more questions than answers. And like many others I did a lot of my own research. I connected with doctors and patients all over the world. I learned a lot, and eventually decided I wanted to see if there was a way to improve health outcomes and healthcare systems. So I joined twitter, I wanted to be a health advocate that could make a difference.
It didn't take long to figure out that there were a host of personalities on twitter. I sought to engage with these people and have met and worked with some amazing thought leaders, many of whom challenge the status quo of medicine. That part of twitter has been amazing. The more I engaged, the more I experienced different types of thought leaders, and I didn't always agree with their messaging. As someone who had benefited from using many aspects of Integrative Medicine (including pharma, naturopath, acupuncture, osteopath, meditation, spiritual work, etc.), I started to see the darker side of twitter. I saw academics and health care professionals that were hell bent on discrediting everything that I had benefited from, seemingly with the goal of wiping Integrative Medicine (ALL OF IT) out of medicine.
I was not amused. Politely and respectfully, I very regularly suggested (and still do) that the broad brush discrediting of Integrative Medicine was a disservice to patients. I was labeled a troll. I engaged with patients who had suffered as a result of side effects from Rx, I was labeled anti-pharma. I engaged with patients suffering harms from psychiatric medications, I was labeled as anti-psychiatry. I engaged with people who felt their children had been harmed by vaccines, I was labeled as an anti-vaxxer. And I kept engaging. People would regularly reach out to me to ask how I could keep my cool and remain level-headed amongst all the vitriol. I assured them that I was far from perfect and was simply doing my best. Remember, I wanted to be a health advocate that could make a difference.
That's still who I am. And I've attracted two types of "followers." I've attracted a host of trolls that seem to see me as a worthy target. Maybe it's because I have a lot of followers, maybe it's because I continue to call out broad brush discrediting of Integrative Medicine, maybe it's because they don't like my messaging, or maybe it's because I continue to engage with patients and Practitioners that are seeking to improve health outcomes and healthcare; truth is I don't really know what makes me so attractive as a target.
I've been added to some of the notorious lists on twitter. One tracks people who it considers to be "anti-science" (I'm not, but I am anti-bought-science and anti-propaganda). People find these lists, think they're legitimate and when they sign up they block everyone on the list. The net result is that many good people get blocked by other good people, all because of someone with an axe to grind. Hey, it's twitter.
If these were "just trolls", it would be much easier to understand. But many of the worst offenders that I've experienced are people that would self-identify as health experts and/or healthcare professionals. Their tactics of fame trolling, outrage mining, and dog piling celebrities, patients and other healthcare professionals are often vile and endless. But many of these people have the blue checkmark, twitter-verified as "accounts of public interest," so what they're doing must be for the greater good.
There are also many amazing practitioners, patients and health advocates on twitter. People who also believe that patients deserve the best and safest care. They are folks I can relate to. They are folks I want to engage with.
Life as an advocate is interesting. I'm sure my efforts will continue to attract different types of followers. I truly hope I am seen as a health advocate that could make a difference.