As an advocate for a lesser-known disorder, I am often faced with viewing news articles that are based on the opinions of sufferers. I am beyond overjoyed that these people feel comfortable enough in their skin to report upon their feelings and share them with the world.
Unfortunately, this has led to a wider spread of misinformation. Doctors, researchers, and other interested parties have contacted me wondering: “Is this what Misophonia is?” Often I am forced to tell them that no, this is just one person’s perspective.
“A wise man makes his own decisions, an ignorant man follows the public opinion.”
— Grantland Rice
When approaching press, we need to be careful that what we’re sharing is ethically-sound, well-reasoned, and based on more than mere assumptions. Much of the links I find in articles are follow-ups from editors, which are clearly the work of mere Google searches. I worry that these stories are only touching on the surface and that information has been taken from the hands of academic institutions and into the realm of a quick Wikipedia scan. This is not how medicine should work. This is not how advocacy should work.
I have nothing against misophonia garnering more press. However, if we’re going to become known for our disorder, we must ensure that the dialogue is pointed toward the betterment of sufferers and not just another way to tell the same story over and over again, without any results. As much as we want to be brave and tell our stories to the world, sufferers of disorders need to realize that real change comes from scientific discoveries and tangible evidence.
“I worry that these stories are only touching on the surface and that information has been taken from the hands of academic institutions and into the realm of a quick Wikipedia scan.”
Right now we stand in a world that has been divided. We, as advocates, are worried that misophonia has been taken away from the hands of sufferers and put into the hands of charlatans and other persons without our best interests in mind. If we want to change this we have to go forward with a plan. As Dr. Brout says:
When you Google misophonia, you get them. When you read mainstream articles about misophonia, you see their treatments and groups referenced in the articles. Instead of informed doctors or researchers, you find people promising “cures” to desperate sufferers. I know people who have been have bilked out of over $10,000 (and more), never mind the emotional cost incurred. [Observer, 2016]
I understand that telling our stories is important to each of us as individuals. This does not mean that we can lead the conversation away from research and potential developments with the disorder. I often worry that we are fighting a war against Google hits and have fallen into a new trap. Ethical journal studies take time to develop. They take years of research to be published. This has increased the importance we must place on mainstream media. If we are not careful – if we are not ensuring that research is being put forward ― we may end up with a repeat of the Kathy Lee and Hoda incident.
“We, as advocates, are worried that misophonia has been taken away from the hands of sufferers and put into the hands of charlatans and other persons without our best interests in mind.”
Misophonia sufferers hold a heavy importance when it comes to their disorder. It is up to us to ensure that we are always fighting for information that has been double-triple fact checked. Right now, we need to remind reporters that WebMD and Wikipedia are not doctors. They are not infallible sources. This goes a step further – we need to remember, each and every one of us, that Google is not a replacement for the opinion of a doctor. In a world where academia struggles to verify its own sources, we are playing with fire when we are unable to even go so far as finding a “reliable source.”
We must remember that Google is a business. Any one can pay to have their ads on page one. There is no peer-review for Google advertisements. There are no ethical boards to report false claims to. Yes, we could potentially sue – but the internet is volatile. It is in our hands to ensure that the information is being found.