2017 is the year of Fake News, false hope, and the year where the divide between miracle and science has been raised so high, so wide, that a clear chasm has formed. – so why would 2018 be any different? Science has been pushed to the side, deemed elitism. Real doctors, I am told, are not ‘fixing the problem’ they are simply ‘ignoring the issues’. Of course, these comments came due to the disorder Misophonia – a neurological disorder where otherwise normal sounds cause a strong reaction – anger, frustration, and what can feel like physical pain. As of yet, there is no cure. Yet, we are still told that real doctors aren’t doing enough. They aren’t treating these patients – these frustrated patients that believe that a cure should be manifested from desire alone.
No matter how many articles put out about how a cure doesn’t exist, no matter how many times Duke University refutes claims by ‘fringe’ treatments, and no matter how many researchers and medical professionals concur, ‘there is no treatment’, this desire for false hope persists. This false hope is so widespread, so permeated in the minds of some sufferers, that it is more damaging than helpful. How, you may ask, can hope be damaging?
There are facts, and there are beliefs, and there are things you want so badly to believe that they become as facts to you.
Julie Beck, The Atlantic
Hope is damaging when it stands in the way of research. It is damaging when persons, instead of actively seeking answers, are spreading nonsense cures. When people who otherwise seem intelligent, are sharing ‘10 ways to bust your belly fat’, or ‘how I cured my Misophonia’, instead of actively following the science – the medicinal evidence. Now, for those looking to lose weight, there’s good news – doctors can actually help with that! For persons with Misophonia, it is the doctors and researchers you are actively shunning that are your best hope. Instead of spending thousands of dollars on a promised “cure”, you could be investing in research. You could be investing in programs that actually provide hope for your disorder.
Action is hope. There is no hope without action.
I have been called elitist because I refuse to budge and support false cures. I refuse to give a platform to the people that have been labeled “such a nice guy”, despite selling false hope – hook line and sinker, to desperate people. I know that I cannot change a person’s mind. They are going to follow their own confirmation bias, and continue to avoid the answers served up by professionals. After-all, what would a neuroscientist know about a neurological disorder? Certainly, a Psych Doctor has less of an understanding of the brain than your average Joe. School, as we know, simply sucks up all of a person’s knowledge and makes them spew random ideas, without any factual basis.
It can be polarizing to realize that the cure to your problem is not simple. If you have a child with a disorder like Misophonia, you have to realize that your child isn’t going to be able to eat at the dinner table with you – the vision of the 1950s-perfect family isn’t right for yours, and that’s okay. Instead of seeking miracle cures, you need to understand your child’s needs, and find relevant coping skills that can lessen the severity of the disorder. This is entirely possible with coping skills, Occupational Therapy, and the work of a trained therapist. What is not possible, is to fix any damage your child may incur due to false treatments.
Medical research is done in ethical environments. Children are not tested on with new cures, before they have been vetted. Clinical trials are done in controlled environments – science, while often changing, takes its strength from ethically based treatments. There is a reason why your doctor isn’t ‘helping’ you with a condition that has no cure – because it is unethical to simply try random pills hoping one might work for a condition they hadn’t even heard of. That reason, of course, is that it’s highly unethical, and possibly dangerous. Luckily, these doctors are following the “do no harm” principle. This is a good thing.
It can be scary to realize that a cure doesn’t exist. There is no miracle pill that will simply erase Misophonia, so, people are drawn to ‘providers’ that claim otherwise – they have fixed the disorder, you will be fine, everything is okay. This feeling of hope can get people through, make them feel like there is hope. That’s great – at first. But, what happens when you have drained your bank account and the cure still hasn’t come?
Instead of pouring money into false hope – people could find more value in supporting science. Choosing to fund answers, and following closely as developments are made. I have hope because I know that the studies at Duke, NYU, and various universities, are actively seeking answers. Real, tested, vetted answers that also further our knowledge of the brain. It’s exciting that science can actually find out the mechanisms of a disorder, and even help treat it. I’m all for hope, but I think hope should be matched with action – and science.Want to learn more? Join a Workshop with Dr. Jennifer Brout or Duke CMER at Misophonia Education.