Chronic Pain Wants to Steal My Life, but I Won’t Let It

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I’ve been living in agony since early 2020, but not for the reason you might think. Sure, the Covid-19 pandemic has affected me as much as the next person, but for me, living with chronic pain has been immeasurably worse.

I have Trigeminal Neuralgia (TN), or maybe Atypical Trigeminal Neuralgia, or maybe Atypical Facial Pain, or maybe Atypical Odontalgia, or maybe Occipital Neuralgia, or maybe Facial Myalgia. The list of diagnoses I have received is almost as long as the list of doctors, dentists, surgeons, chiropractors, acupuncturists, and physical therapists I have seen. Each one tells me my case is “unique” or “tricky” or “interesting.” Half of them scratch their heads and have no idea what to do with me, except to send me off to someone else. Even worse are the ones that assure me they can “fix me.” “We’ll have you feeling better in two weeks.” “We can fix this, but it’s going to take time (read money).” “Healing is a process, just keep coming back for x amount of time.”

My first brush with TN was about 10 years ago, after which I went through a years-long period of remission (unique…) before it reared its ugly head again in 2020. The pain is constant and burning, affecting my cheek, face, teeth, upper lip, lower eye, jaw, neck, base of my skull, and scalp. Sometimes it's in all of these areas. Sometimes it's in one. It rarely ever goes away. My teeth hurt so bad that I want to rip them out of my face. Right now it affects my right side, although previously it was always on my left (tricky…). I take large doses of anti-convulsants daily to get the pain down to a “manageable” level. My brain feels fogged, my balance is unsteady. It hurts to smile. A light breeze on my face causes me agony. Wearing a facemask is torture (but I wouldn’t dream of not wearing one). It hurts when my toddler touches my face. I’m tired. I’m gaining weight. I’m not allowed to get pregnant even though I desperately want another baby. I also can’t take birth control because it interacts with my medicine. My house is a mess because most of my (and my family’s) energy is spent just trying to hold it all together, but many times, I just simply cannot.

At times my job as an elementary band teacher (a job which I love, by the way) causes me immense amounts of pain. As you can imagine, playing musical instruments can be quite painful. Although sometimes it’s not (interesting…). My relationships have suffered. Sometimes I just don’t have the energy or mental capacity to hang out with a friend or answer a phone call. Perhaps more than anything, my family life is affected. My husband has been a rock, constantly reminding me that I can do this, it’s not my tooth, and that I have survived this before…because right now that’s what every day is for me— survival.

But this is hard on my husband too. Maybe just about as hard as it is on me. On the days where I just can’t (do anything) he is there to keep our 3-year-old son occupied, cook dinner, do the laundry, walk the dog, write his own lesson plans, mow the lawn, and help our son “write” me heartbreaking letters saying how much he wants to play with me when I feel better. Even when I’m feeling okay he’s picking up the slack while I got to a minimum of 4 doctor’s appointments and/or therapies a week. The amount of time spent at different appointments alone is exhausting. Sometimes picking up the phone to schedule yet another one is an impossible task. And when I inevitably get to a point where I can’t hold it together (which seems like once a week these days) my husband is the one there to help me put myself back together after I break down. I miss spending time with him and our son. I miss not worrying about if the pain will ever go away (or if I’m feeling okay when it will inevitably get worse). I miss my life.

Trigeminal Neuralgia has been called the suicide disease (a controversial term among the TN community), and I can fully understand why. While I have never gotten to the point of wanting to take my own life, my family has seen me break down in tears and proclaim, “I can’t do this anymore” more times than I would like to admit. And in those moments, I am not being dramatic. I am exhausted by the “everything” of it all and it truly feels like I cannot handle it for one second longer. I am extremely fortunate to have such a strong support system because without them I truly don’t know what I would do or where I would be today.

October is Facial Pain awareness month, and I am sharing my story because there aren’t enough doctors out there who know how to help people like me. We call ourselves “warriors,” and we truly all. Not all of us are lucky enough to have family and friends who can empathize with what we are going through. We’ve become extremely skilled at hiding our pain, but don’t let that fool you into thinking we aren’t feeling it every single second of every single day.

Not all of us have access to doctors who know how to treat our condition, or in many cases have ever even heard of it. Many warriors have been suffering for decades without relief. We fight every single day because the only other option is to stop fighting. And we are all stronger than that, even when it feels like we aren’t.

For more information on Facial Pain conditions, or to learn how you can help, please visit www.facepain.org/face-today-together/.