A Swedish Misophonia Story

MisophoniaIf I just could remember the first time I experienced that awful feeling, the frustration and the adrenaline pumping in my body, trying to fight or flight that sound that hurt me so much, that made me rage, I would go back and try to tell myself to ignore it and not respond. Then, I wouldn’t have this problem now several decades later, right? If only.

I´m 44 now and not a day since my early teens can I remember one whole day without responding to sounds in an almost instinctive way. I feel that sound, especially mouth smacking and snoring, impose on me like an irritating wasp and with the same respons as I react to the wasp by trying to chase it away, I react to specific sounds. They hurt me inside like as if the wasp had stung me. It hurts for a short while and then it goes away. That feeling of being stung occurs often, perhaps 10 times a day or more, so the accumulated feeling is that it feels like I carry a waspnest on my shoulder. 24 hours a day. Every day. It has been like this for at least 32 years and always will be (I guess).

I can’t shake it off! As a matter of fact, the wasp-nest keeps getting larger, since the sounds that I trigger from keeps increasing. For me, the worst is how much it hurts the ones that are living with Misophonia sufferers. How they always have staring eyes on them. Or, the immediate snapping comment as soon as they make an offending noise. As much as I try to explain Misophonia to my family members, how it works, how it makes me feel inside (e.g., hurt, anger, rage, sadness, frustration), it’s hard for them to grasp or understand. If my disability were visible would they think and react to me differently? Would they tease me or just ignore the fact that I’m feeling like I’m being bombarded with something that make me wish that I were deaf or totally isolated?

If they could experience that feeling of always having a tiger chasing you around as its object for lunch, would they understand then? It is not only Misophonia sufferers that should show respect. The home should be safe for sufferers and family members but it often isn’t. Respect from sufferers and family members must be mutual to obtain a safe, non-triggering home. Education and understanding is the key, I think. This may not be entirely possible, but it can be mostly achieved through compassion and understanding.

If there were a ”treatment” (i.e., take a pill) for Misophonia I’m not sure I would take it? Why? You may think when I say that I carry around a wasp-nest on my shoulder. Well, the question is will it help me? Or will it inhibit my good sides, my creativity and so on? If it could make me cope with the stress and help me cope generally then yes, I would. I guess if it would help my family. In the mean time I’m trying to help others with Misophonia, or that are parents to a child with Misophonia or anyone encountering it. I´ve started a Facebook page for Swedish followers hoping to be of assistance (non profit). I tell my story there and I try to keep up with research, other Misophonia sufferers (bloggers) and I feel it’s helpful for those who want to share their story or get some advice.

Submitted by Susanne