Issue No. 5: Stressed Out!
Words - Natalie Forman
Illustration - Clàudia Capdevila

For over twenty years I have been suffering from an illness that impacts every aspect of my life, but I didn’t even know the name of it! In fact, for many of those years my illness didn’t even have a name. It was not until the year 2001 that a pair of audiologists coined the term that I would accidentally stumble upon in my late twenties: Misophonia. 

If you visit the Wikipedia page for Misophonia, which I immediately did upon learning the term, you will quickly discover that there is not much information there. This is because Misophonia is still largely unstudied, and technically not a diagnosable illness. There are no scientifically-endorsed diagnostic criteria for Misophonia, so people like me who recognize themselves in the invisible symptoms described and shared by other sufferers online, are self-diagnosed.

What is Misophonia?

Misophonia is a condition that causes its sufferers to experience negative mental, emotional, and physical responses to everyday sounds, the sort of sounds that most people never even notice. There are some noises that tend to be common triggers, such as those associated with eating, but Misophonia affects each sufferer uniquely, and what triggers a response in one person may not trigger someone else.

Reactions vary depending on a number of factors, but can range from:

• mild irritation

• physical symptoms like nausea or headaches

• a need to block or escape the sound

• or uncharacteristic feelings of rage.

Despite this, because Misophonia is considered neither a hearing issue nor a mental health issue, most health care providers have never even heard of it. 

In an age where information on every imaginable topic is available to us in an instant, it can be extremely discouraging to be confronted by an empty space instead of the information you need. Dealing with a chronic health condition is incredibly difficult as these conditions are largely out of your hands, while having a significant negative impact on your quality of life. Factor in the lack of data that leaves you without an understanding of what caused your illness or how it functions, and add in a medical community that mostly fails to even acknowledge the existence of your disorder, and things can feel much more hopeless. 

Living with a rare or misunderstood illness adds significant stress to the already stressful experience of living with a chronic illness. There is the fear that comes with not having answers to what causes the illness, what makes it worse, or what the possible outcomes will be. Then, there is the often unavoidable financial pressure. Most North American insurance companies will not recognize medical claims that do not extend from a formal medical diagnosis, or that are associated with a new or experimental treatment. This means that the cost of treatments for rare or newly recognized conditions like Misophonia must be paid for out of pocket. These treatments and procedures can be quite expensive, leading to the additional burden of financial stress. 

Lastly, it can be very alienating to not have our pain and suffering recognized, acknowledged, or understood by our communities and the world at large. Finding the necessary emotional support is essential, but can seem impossible when nobody around us sees, let alone understands, what we are struggling with. It can be exhausting to have to explain your condition over and over again, and frustrating to be met with a lack of empathy when you take the time to do so.

I've been fortunate to find support and community online. Connecting with other people who struggle with Misophonia has helped me survive two decades of living with an illness that would otherwise be isolating. Reading stories, having conversations, sharing experiences, and following any and all links to new science related to Misophonia, has decreased my stress and stopped me from feeling absolutely alone. Find your people online and reach out to them however you are able, because it is those connections that will help you keep pushing forward. If you have the capacity to share your own observations and experiences with your community, you will also contribute to a larger good–some day, someone may accidentally stumble upon your words and finally recognize themselves.