Dealing with Gaslighting
When you start getting ill with a post-viral syndrome, many of your symptoms may be non-specific; i.e. they don’t yet point to a specific illness.
This is when you need to watch out for gaslighting. Doctors generally don’t mean to gaslight you, but it happens. Women in particular have a long history of having their health issues overlooked by the medical establishment and there is a serious lack of research on women’s issues in academia and industry. In the doctor’s office, gaslighting means dismissing or overlooking a patient’s symptoms.
Some of the gaslighting is because doctors are trained to be confident and know everything, yet they can’t and don’t. Some of it may be because their medical training never covered some of these issues. Some of it may reflect cultural biases that teens are always sleepy, or staying up too late or not eating well. That they all have a little anxiety. This is a great example of “Adultism” against teens. Check out this article by the Institute for Public Health at Washington University, St Louis.
When presenting my symptoms to doctors I was frequently told that I should “drink more water and eat salty foods.” When I did that and it didn’t help, my parents were told by my pediatrician that I was likely a case of “school refusal” — even though I had always loved school. No one believed me.
The best answer we got in the early days of being ill was from an older pediatrician when I came in to the office yet again feeling very sick and she told my parents that I seemed to have something she calls, “the blahs.” She told us how she sees it occasionally with tall, thin teenagers (take note because this will come up later) and there’s really nothing we can do but wait for it to go away. When my parents asked how long that would take, she told us, “you don’t want to know.”
Luckily my family and I didn’t stop looking for answers, and you shouldn’t stop either. Our next stop was with an Infectious Disease specialist where a series of lab tests showed I had high levels of viral activity, and I was finally given a diagnosis of “post-viral syndrome.” Finally getting a diagnosis was a relief. But when we asked about treatment, again, at a major research university, I was referred to the the integrative health center for Cognitive Behavior Therapy, meditation and diet changes. I’m all for integrative approaches, but this seemed like more dismissiveness.
One of the pioneers in this area of medicine, whom I respect deeply, is Dr. Peter Rowe at Johns Hopkins. He has often chastised other doctors for being guilty of “nihilism” — not doing what they can to relieve the suffering of patients because there is no single approved cure. That can happen. So know this: If a doctor won’t try to help you, move on. There ARE treatments out there that can help.
