Facial pain can be described in many words…but if you had to choose just one, what would it be? The YPC recently shared how we would describe TN in one word and how we plan to overcome TN. Here is what we said:
Ally’s word: cruel
If you have ever felt the pain of trigeminal neuralgia, you know that it is cruel and that nobody should ever have to experience this pain. Being diagnosed as a teenager, I thought the torturous pain was just cruel. At times, I thought what did I do to deserve this torture? Why should simple tasks be cruel? Shouldn’t I be able to eat ice cream without ending up on the floor in pain? While the pain I face each day is cruel, I also look at each moment I can do things as a gift. I will continue to fight the cruelty of the pain and try to stay positive in the times my pain seems so cruel that I just want to be negative.
Kenzie’s word: humbling
I use the word humbling to describe TN. As a child who was diagnosed with this disease it took hours of explaining in order for me to understand what was happening to me. I say I often feel humble when referring to TN because when I begin to feel sorry for myself I am reminded that there is someone in the world that has it worse. As I describe to people my pain I tend to diminish what I’m going through because I don’t want to take away from other’s experiences. I want to work on this delivery. I often forget that though, yes, someone does have it worse off I still went through debilitating pain every second of the day and am now dealing with the repercussions of pain, medications, and brain surgery. I should feel proud that I woke up every day and faced TN. I want to talk about my experiences with confidence, rather than fear of minimizing someone’s own story. Everyone’s story is important, and that goes for mine too.
Nick’s word: battle
I chose battle because Trigeminal Neuralgia is a constant battle. It’s a constant battle that has many mini battles for some that suffer its battles like going to a family party, taking a shower, or just going to work and school. This battle is horrible and it takes a lot out of all of us but at the end of the day it’s a battle we’re all committed to win! I want to help others win their TN Battle too!
Ellie’s word: ouch!
It comes as no surprise – trigeminal neuralgia hurts! When doctors have told me that “we are running out of options” or that “there is not much more we can do,” that hurts just as much, but in a different way. The thing is, a well-educated patient knows that we are never out of options. This year, I’m going to do more research on possible medication options, pain management techniques, and continue to explore surgical options. I’m going to advocate for myself when I know a treatment plan isn’t working, and walk into appointments with more knowledge than ever!
Brandi’s word: unrelenting
I describe my facial pain as unrelenting simply because it is always there. My neuropathic facial pain is the result of nerve damage from an oral surgery. Therefore, my pain is constant and persistent. It does not yield, it is an ever present entity in my life and it shows no mercy. I’ve struggled tremendously knowing that there are no clear treatment options for me and that it’s all basically trial and error as the damage progresses. Coming to terms with my lack of options and consequently, my limitations, has been one of the hardest aspects of adjusting to life with TN. This year, my goal is to be more patient with myself. Specifically, to be more flexible with my expectations of my abilities and also be more forgiving of myself if I can’t do as I once did. Sometimes we all need to go a little easier on ourselves. I figure if I give myself a break, maybe my facial pain will too.
Chris’s word: torture
I use the word torture to describe my experience with trigeminal neuralgia. I would also like to note that I use this word sparingly after a long history of other health issues that stemmed from brain cancer. It took a long time to find a doctor that would actually attempt to treat me, and even then the treatments only lasted a handful of months. After brain cancer and around 17 surgeries, I knew how to fight but did not know if I had it in me. I wished back then that I could trade my TN for the cancer, my TN was so much more painful. I even contemplated ending the pain on my own terms. However, I ended up finding a doctor that was willing to work with me and helped me get the pain under control through surgeries. It was a long and torturous experience, but I wouldn’t change it even if I could.
Steph’s word: debilitating
No one could stop me from doing anything I set my mind to. I had life in the palm of my hand. Then, I was diagnosed with trigeminal neuralgia. Despite my ever growing will to push on, I found TN very debilitating. It stopped me dead in my tracks. Some attacks were short, other times the pain hung around for days, one debilitating strike after another. But, I educated myself and still continue to do so, to take back my life the best I can. To overcome the debilitating pain my TN causes me I take better care of myself, prepare against triggers, and continue to learn new ways to control the pain. I have made a promise to myself to continue these new patterns and take my life back so that I can eliminate the word, debilitating, from my TN vocabulary.
Mandi’s word: lonely
I used the word lonely to describe TN because there are many times living with any chronic illness can be lonely and isolating. Often, I find it easier to hide my pain, live behind a smile, and not share my experiences with TN on a daily basis. Yet, when I do that, I experience the feelings of loneliness and isolation and I feel as though others do not understand my pain and my life with TN. I plan to overcome that by sharing more and being honest about how I am feeling.I plan to not answer, “I am ok” when people ask how I am feeling, I plan to talk about my pain and my life more to friends and family. My way to overcome loneliness and isolation is to share more, talk more, and be more present overall. The more open I can be, I believe I will continue to build understanding and support. By not allowing TN to make me feel alone, I will overcome that aspect of TN.
The YPC knows that TN is not easy, but we are determined to push through 2018 with hope and tenacity. We hope that however you describe trigeminal neuralgia, you will find a way to celebrate life and push forward every day.