I wrote a similar blog at the start of last year’s WEGO Blog Challenge. I have borrowed some of the text from that post and present here, the reasons why I continue to write about my health issues and challenges:
1. I have health conditions that are not typical that have been misdiagnosed since I was a child. The work that I have had to do (research, letter-writing and numerous visits to multiple doctors) just to get my conditions recognized and treated is ludicrous! No human being in the 21st century should have to dedicate every day of their life to researching their own ailments, making phone calls to research facilities and pharmaceutical companies, writing and calling doctors begging to be seen…patients SHOULD NOT have to resort to campaigns of this magnitude to receive a diagnosis and get help for their conditions.
2. Technology is available to everyone – its about time that we expect our well-paid physicians to do this research and diagnose their patients. There is a HUGE backlash by physicians against patients that do their own research – they even have a name for it, “cyberchondria.” I strongly believe that doctors need to realize that the few minutes they spend with patients before dismissing them is an insufficient and inefficient way to treat a patient with complex medical problems. Our physicians are trained to be diagnosticians, yet very few of them are actually doing this part of their job. If they don’t want their patients turning to the various questionable incarnations of health information available on the internet, then they should be proactive and research their patients’ health issues themselves. (I am extraordinarily blessed to have two such doctors that do this – it takes seconds to type in a search term and retrieve peer-reviewed journal articles and professional texts…so it IS possible for doctors to be successful diagnosticians within the constraints placed upon them by the health insurance industry.)
3. I think people need to hear the realistic side to having certain conditions. I do not see much value in the rainbows, unicorns and ersatz sunshine blather that crowd our bandwidth. This is NOT reality! We all find our own ways to “cope” – and not everyone has the loving family or immense support system that doles out sympathy and validation, or the large cash reserves to “cope.” I have never been one to be helped by hearing about how, for example, a certain Miss America “got over” being sexually abused as a child. That sort of esoteric nonsense was waved in front of my face for years by therapists, and worst of all – by my mother. The hidden meaning behind these messages sounds like, “YOU aren’t doing well because YOU are doing things WRONG and I am doing things RIGHT. I deserve ALL the attention because I AM RIGHT!”
I choose not to cruise the river of denial, and I refuse to validate the Münchausens among us so I bypass those deceptive meanderings. Also, I strongly believe, to quote a good friend, that “there is no place for unicorns in medicine.”
4. Patients have the responsibility to learn about their health conditions and not rely solely on what a health care professional tells them. The paternalistic model of healthcare is passe’. Twenty-first century medical treatment is a team approach – with the doctor and patient working together to manage the patient’s health challenges. As I have learned over the past 20 years, these health professionals DO NOT stay current on research and developments in their fields, while holding themselves out as experts.
Who am I to have such strong opinions? I am an educated and experienced researcher that utilizes only professional databases containing peer-reviewed journals and professional texts as the sources of my medical information. I also follow a couple of professional (read: doctors only) blogs to keep track of the advances (and back-sliding) in the professions’ attitudes toward doctor-patient communication and patients’ proactivity. I have learned how to navigate the murky waters of the healthcare systems in the US while advocating for competent health care for myself and my mother for over 26 years.