Misophonia & "Crazy Mothers"
What to do when you are blamed for your child's mysterious disorder
Posted Feb 18, 2018
I cannot begin to count the number of times I was blamed for my child's Misophonia. Of course, this was in the 1990's before the disorder was termed by the Jastreboff's. At the time, we were calling it "auditory over-responsivity".
The idea that auditory stimuli could bring about a nervous system reaction was already documented in basic neuroscience, Sensory Processing Disorder (SPD) research, and of course by the Occupational Safety and Health Administration (OSHA).Yet, I was a "crazy mother", apparently making up symptoms of a condition that didn't exist.
It didn't even help to explain that I had the same "mystery disorder". Revealing this only created more suspicion.Explaining that I was a psychologist did not add to my credibility either. I found, in fact, that sometimes my profession made situations worse.I was a crazy mother and some kind of rogue psychologist.
I often wondered what others thought. Did people really think I had made up this phenomenon? Did they think I brainwashed my child to "fake" the reactivity she experienced? I am not saying that there weren't any wonderful teachers, friends and/or clinicians who were "believers" and who did not pass judgement. There were many! Yet, too many times for my taste, I was deemed a crazy mother.
Fast forward two decades later and Misophonia has a name, and has gained ground in both the academic and popular press. Of course it is not in the DSM-5 or other diagnostic manuals. However, news is traveling quickly around the Internet (which it did not in the early 1990's). My children are young adults now, and my days of speaking with their teachers are long over. However, I work with numerous families dealing with Misophonia. I had hoped that "mother blaming" would not rear it's ugly head again.
Yet, it did.
Mothers (and of course fathers alike) tell me stories that remind me of my days gone by as the "peddler of made up disorders". They ask me what they can do. How can they get their child's teacher, a psychologist, their friends, or their sister-in-law to believe Misophonia is real?
Digging into the recesses of some not-so-pleasant memories,I realize that half the problem was always being caught off guard. For example, teachers often asked me about my child's issues during the two second conversation we could barely have during school pick up. Well meaning relatives offered unsolicited advice about how to handle my child. Doctors offered "alternative theories" about what might be bothering my child.I often stood there dumbfounded, even though this similar situation happened over and over.
Eventually I came up with some strategies that really helped me:
- Don't get pulled into the trap of defending yourself, your child, or the disorder
While it can be difficult to refrain from the natural urge to make everyone you know understand Misophonia, think of it more as a process (i.e. allow people a learning curve).
- When faced with other peoples' misconceptions about Misophonia (and your child's behavior) don't tell, ask.
- For example, even though you are disappointed, hurt, angry and heartsick, try politely asking the person if they know anything about Misophonia.
- Often this "disarms" the other person, as they actually don't know much and are willing to learn.
- Supply others with links to websites you like, research articles and/or popular press articles that you find useful. It frustrates us that the research on Misophonia is in it's infancy. However, a little information may go a long way for someone who has never heard of the disorder.
- If you find yourself in the "defense trap" again with that same person, kindly remind them of the information offered. If they haven't read it, maybe they will now. Remember the learning curve.
- Allow yourself to opt out of discussing Misophonia and your child with anyone and everyone who asks.
We feel a continual obligation to make the world understand what we know about Misophonia, and about our particular child. However, sometimes we have to give ourselves a break.
- Expend your energy (because it does take energy) to explain Misophonia only to those people to whom you feel it is truly necessary.
- Teachers are usually on the "need to know" list, but teachers are often busy and conversations take place when everyone is in a hurry. If this occurs, email or call the teacher and make an appointment. If an appointment is not an option, send information. As difficult as it may be, follow the same guidelines in terms of the learning curve.
- Whether it is someone staring at your family in the grocery store, or an acquaintance at the gym asking "what is going on with your child", remember you do not have to explain to everyone.
- Although you may be tempted to make "believers" out of everyone you know or meet casually, at the end of the day this doesn't help you or your child. It only serves to make you more stressed. Give yourself a break.
Here are some resources you may find helpful
For a full Literature Review on Misophonia https://www.frontiersin.org/articles/10.3389/fnins.2018.00036/full
Information Packet on Misophonia to Download: https://www.misophoniainternational.com/misophonia-professionals-information-packet/