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The Symptom of TMJ Nobody Warned Me About

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When I was diagnosed with temporomandibular joint disorder (TMJ) I was relieved. For months, I had been having the worst headaches of my life, relentless ringing in my ears that kept me awake all night, and constant ear pain. At first, doctors blamed it on an ear infection, a virus or maybe stress.

When they eventually came up with TMJ and told me it was easily treatable, I was so happy I would’ve agreed to any treatment. I did, and at this point, six months later, I have tried most non-invasive treatments: mouthguards, special diets, massage, heat, ice, stress relief. I’ve puzzled many doctors who all tell me “this doesn’t just happen.” But after having dealt with it for six months, I have started to come to terms with the fact that this might be a longer fight, but it is a fight that I will fight.

I wish there had been a warning in that first appointment or any of the following appointments – the worst symptom was not any of the physical symptoms I constantly battled, it was the fear.

At first, the fear came with each new symptom. Why does it suddenly hurt so much to talk? Why does my jaw make noise when I open my mouth? Why is it so hard to chew food? Instead of trusting my body as I had my whole life, I was afraid of what would happen next. I felt like my illness had taken everything from me – my ability to talk without pain, my ability to eat without pain, my ability to sleep without ringing (white noise apps gave this back). What would it take next?

Even though the treatments are supposed to help, sometimes they were just as scary as the symptoms. “No yawning” one doctor told me, “hold your mouth shut.” Great, now every time I want to yawn I not only worry that my jaw will crack as it usually does, but I worry I am making it worse. Most recently, I’ve been put on a soft-food diet. Chewing is one thing that makes all of my symptoms worse, so this seemed like a logical solution. Now, every time I cook a new food, I am afraid. Afraid to worsen the pain. Is a cookie worth the hours of jaw pain that will follow? When even cooked vegetables are too much to eat, what can I force myself to eat? The medications I was prescribed made me so sick I missed days of class. If I can’t trust medicine, what else would ever help?

The fears are not just physical. I am afraid of being believed when I explain my condition. How do I explain the fact that sometimes I can talk to my friends for an hour but then when I’m sitting in class after a meal I can’t say a word because my jaw hurts too much to move? How do I explain the fact that some days I can run five miles but other days I’m exhausted from the constant pain and fatigue that comes with it? I am afraid because I’ve seen doctors and therapists who dismissed my condition or told me it was all because of stress. Yes, clearly I am stressed, I am stressed because I can’t trust my body.

And mostly, I am terrified I will never get better. What if this doesn’t just go away?

If there’s one thing I could tell myself when I got diagnosed it’s that it will be OK. There are days when it will seem terrifying and I will feel helpless against this disease but they won’t last forever. I would tell myself to explain to my friends what I’m dealing with and be honest about how it makes me feel to be so afraid. And if my friends or doctors dismiss my pain, I would tell myself that I don’t need them. Because I deserve to have people around me who will support me through the challenging days. Even though fear is terrifying and seems overwhelming, it can be fought and it can be overcome.

Now, I choose not to be afraid. I certainly won’t accept my illness as permanent, but even if it lasts a while I plan to fight every symptom. And most importantly, I won’t let it overtake my life.

Getty Image by Tharakorn

Originally published: July 7, 2018
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