This morning, with tears streaming down my face, I wrote in my journal: “I have been stripped of my basic human dignity”. I wrote this about my struggles with misophonia. Two and a half pages I settled on the thought, “I am sick of being the bad guy. Of my brain stealing every interaction. I am sick of explaining. I just want to live my life without feeling as though my life has been changed.” For those of you that do not know, I lived most of my childhood and teen years without misophonia. Though I struggled with severe anxiety and depression – nothing has impacted me like this disorder. As an advocate I have been rather vocal about research and misophonia. Time and time again I tell people that we must have hope. We must champion our cause and stand up for a cure. I believe this whole-heartedly. What I may not explain is that I’m tired. Physically. Emotionally.
I am asked by many people, “how do you cope with misophonia?”. I cringe when this topic comes up. I want to help people. I want to tell them exactly what helps me. Aside from faith that research will someday answer my perils, the truth is bitter. It is not an easy one to hear. It is less easy to live. I don’t cope with misophonia. The sensory diet is a great resource – and it does work when it’s utilized properly. But it’s not enough to cope when the triggers happen. I also live in a constant state of fear that they will happen again. If I am triggered I become sick. Very sick. I get migraines. Because of my amazing memory I am constantly bombarded. I am triggered for hours, sometimes days or weeks by the mere memory of an event. If a person or place becomes a problem, chances are I will never go back. I struggle with the emotional weight of this. I logically want to attend these life events. I want to go to weddings, even funerals, but I cannot. I have simply shut down. The intensity of triggers is so great that I have become nocturnal. I spend my life locked up inside my bedroom. I spend my nights trying to hide from people. The truth is that I cry a lot. Every day. This disorder has truly stripped me of what it means to be human: community.
I am sharing my story not for some heartening message. I am sharing my story because I am tired of being tired. I cannot in good faith be positive about this disorder all the time. It has stolen from me my university experience. It has stolen my desire to interact with friends and family. Even when I was heavily depressed I felt like I had a future. Now, without a cure, I am faced with a grim reality. I will hide from triggers for as much time as possible. I cannot face them. I cannot bring myself to subject myself to pain. I should be stronger, but unfortunately I can only handle so much.
I miss the child I used to be. The fun-loving girl that would talk to anybody. Who talked to strangers on a ferry in Newfoundland about dolphins. I miss the little girl that would stand in the mud in a ditch all day – inviting the neighbors in for lunch. I miss the child who was fun loving and always ready for a party. The little girl who would stand on tables at Tim Horton’s and sing for the crowd. Nothing was too much for her. She was always ready to be near people – to love and to understand them. I miss that connection with the world. I miss not knowing what misophonia is.
I do think research is our best hope. I think everyone with this disorder should be proactive about spreading the message and donating. Most importantly, I realize that we have to live with this disorder until we can get a cure. For me, that means several more tears. That means days, nights, and moments where I’ll scream at loved ones (and later feel devastated). It means missed family barbecues, and feeling too sick, tired and in pain from my lapsed sensory system. I understand when people cannot fathom the scope of my suffering. I understand because I struggle with it myself. I want to let go of my pain and live a free and happy life. I want to be free of misophonia and all its horrors. Unfortunately, I can’t be. Not until we raise enough money. Not until the research is finalized at least in a sense of finding answers. If you take anything from this, I want you to see my pain. I want you to empathize that this disorder has shattered so much of my will and personality. Sure, I still try. I still have advocacy endeavors and I still put as much energy as I can muster toward being proactive. That doesn’t mean I’m okay. If I were okay, I don’t think I’d be fighting this hard.
I have been asked by many people why I don’t smile. I don’t smile because even in the good moments, in the glimmers of light that one may consider sparks of hope, misophonia is there. It is in the back of my mind and it is clawing at me. Will that person start to whistle? Will my attempt to get out of the house be met by coins jingling? Each time somebody tells me the world “cannot change for my misophonia” I burst into hopeless tears. I cannot change for the world, either. I am trying. I am trying so hard with every breath.
Right now you can donate and purchase the beautiful song, “This Land Is Your Land” by Uncommon Folk ft the late (and great) Glen Campbell. Some of this money will go to misophonia research. Please consider giving even a $1. Even if you’re unable to donate, think to yourself about how important research is. Or, if you don’t have misophonia – go outside. Live in the world and be grateful you’ve never had to experience this. The world is a beautiful place and I hope that someday I will be able to enjoy it again.