NOTE: I got LOADS of negativity about this post. If you don’t want to hear the truth, don’t read this post. I don’t embellish, beat-around-the-bush, or fill my blogs with platitudes. I’m not just someone that has a medical issue that wants to blog about it. I’ve got loads of research experience and over 25 years of medical advocacy experience. I’ve been to senators’ offices to fight for patients – and I know what is necessary to make change.
This is a simple one. IMHO.
First, you must decide if you ARE a health activist, and actually trying to educate the public or medical “professionals,” or you are simply blogging your sunny thoughts about coping with chronic illnesses.
If it’s the former, and you post FACTS from cogent sources and not from Facebook blather or patient-created support sites, use only peer-reviewed journal articles, publications from respected medical sources and medical texts – you ARE a medical activist.
If it’s the latter, you are NOT a medical activist. You are simply writing a public diary. Which is fine – some people like that stuff.
It is very obvious to me who has true and relevant information about their disorders. I published a plea yesterday asking for the names of doctors’ from people that are diagnosed with forms of autonomic system disorders so that I could create a “go-to” page for people looking for credible doctors that are familiar with the many forms of “dysautonomia” …and I received two – TWO -responses!!! That’s IT??
If you see a doctor that is giving you awesome care for your disorder – why wouldn’t YOU want to tell others suffering with similar symptoms where to go for help??? If this doctor has valid information he is sharing with you and is helping you live your life in a more productive manner than your would without his or her assistance – wouldn’t you, as a “medical activist” want to help others? I would gladly do so, and therefore, I have been sharing information about top notch docs since the early 1990’s.
Likewise, if you had negative experiences with doctors that did NOT provide you with good care or provided you with information that was NOT correct – wouldn’t you want to warn others so they didn’t waste time, money and emotional agony going seeing doctors that are not helpful? I sure as heck would, and I do.