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Coming out of the Facial Pain Closet

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Being diagnosed with trigeminal neuralgia, or any chronic illness, is no easy pill to swallow. Receiving the diagnosis can be both scary but also oddly welcoming — getting validation of your pain can be a relief. One challenge that comes along with trigeminal neuralgia is figuring out how to tell people in your life about this condition they most likely have never encountered. Various questions may come to mind: Do you tell them? How long should you wait? How much should you tell them? Will these people think differently of me?

While disclosing your health conditions is a personal choice, we on the YPC are coming out of the proverbial closet to share our stories about when and how we told different people about having trigeminal neuralgia.

Coming Out to My Family

I told my family members about TN after I finally had a true understanding of what was actually taking place inside my body. My family immediately rushed to look it up and found some situations that were better than mine but some that were worse. It’s very difficult to hide TN pain, especially when you have constant as opposed to episodic pain. I did my best to put a smile on my face and push through each day. Family members would often say that I “looked good,” and, in a way, I liked hearing that because it meant I was hiding the pain well and seemed “normal.” Words could never truly describe the pain to them, though. But they tried.

Coming Out to My Friends

I recently made a new friend and we have become quite close. She and I quickly learned that we had a lot in common: we’re moms to all boys, we both hate the color yellow and, strangely enough, we even have the same haircut. I briefly mentioned at that first playdate that I had a disorder that affected the nerves in my face. I knew from our first playdate that she “got” me, which became even more obvious after she became aware of my battle against trigeminal neuralgia. I tend to be somewhat private and reserved and therefore didn’t go into much detail. My friend took it upon herself to do her own research on TN and neuropathic facial pain. Before I knew it, she was offering to help me raise funds toward research! Sometimes it takes a perceptive person to hear the things you can’t say and I am thankful to have such a person in my life!

Coming OUt to My Teachers

I told my high school teachers about TN before I even met them. The minute I got my class schedule for the following school year, I emailed my new teachers and informed them of my situation. I never let them see me in pain, so they never truly understood what I was going through, but they were understanding of my situation nonetheless. This year, I started college and I have yet to tell any of my professors. I’m in remission due to a successful MVD, so it doesn’t seem like such a big and important part of my life. I’m excited to be the “normal” student again, so I’m not going to give them a reason to look at me differently unless I have to. But having gone through it already with my teachers in high school, I know that communicating and educating about my condition will help them understand if I ask for extensions on projects or other accommodations. I hope it doesn’t come to that, but I’ll be ready if it does.

Coming Out to My Spouse

I told my husband about TN before we started dating. In conversation, he had heard me talk about surgeries, medications and missing school. I was comfortable sharing little bits and pieces with him because, at that time, my pain was manageable, which made it easier for me to talk about. Ten months into our relationship, my pain drastically increased. It was at that point I shared more with him about my pain, triggers and limitations. I was afraid he was going to be scared and not want to be with me, but the opposite happened. My pain added new challenges, but they helped us learn how to overcome obstacles we faced in our relationship. I learned how to communicate when I was having more pain and what he could do to help, and together we figured out that we needed to be flexible in our plans. TN requires a lot of give and take on both of our parts but in the end, I truly believe it made our relationship stronger.

Coming Out to My Employees

I tell my employees right away about TN and I share TN information often. I feel that it is important for them to know what I deal with and why, for example, some staff meetings may be different than others because I still experience pain on a regular basis. I think it is important for staff and the team to know that there are days I may struggle; I want them to know that I will also support them in whatever personal issues they may be experiencing. More importantly, I want my staff to feel empowered and encouraged by the fact that I am willing to share my story and share my pain. We all face our own type of battles, and I want my team to know that if we share and take care of one another, we are stronger as a department.

Coming Out to My Co-Workers

The first people at work I told were the co-workers with whom I shared work duties. It wasn’t something I really wanted to reveal, but transparency was needed in order to keep peace. I wasn’t looking for sympathy or support but wanted them to be aware of my situation in the event I fell behind on my duties or had to miss a day of work. I always thought I hid the pain well, but as other co-workers saw the pain come and go, they made it easy to share my TN story by simply asking if I was ok or if there was anything they could do to help. I still have not told all of my co-workers that I have TN, but when an opportunity presents itself I use my story as a way to spread awareness.

Coming Out to My Boss

I told my boss about my facial pain before I was even diagnosed with TN, since I needed a lot of time off of work for different appointments as I was trying to figure things out. Even though I was skeptical about letting my employer know so much of my personal business, I chose to be transparent so that I could ask for accommodations as necessary. As a result, my boss is extremely flexible about letting me work from home on high pain days. On the flip side, I have also had to up my game at work, so I am confident that she will never question my dedication and work ethic. The more I communicate with her about my struggles, the more flexible she is. As long as I get the job done, she does not care where or when I work.

Coming Out to My Child

I told my son about TN in age-appropriate stages. I had been battling facial pain for 13 years before he was born, but was not diagnosed until he was four. It was something I hid from many people in my life, but surgery forced me to be more candid about my condition. When I was scheduled for an MVD, I made my son a homemade social story book, explaining that mommy was going to have surgery on her head and what life would be like while I needed time to recover. I’ve since had four other surgeries and have explained much more to him, saying that mom’s face hurts and he needs to be gentle when it comes to things like jumping on me in the morning for kisses and hugs. He’s learned the most by hearing me explain TN to other people and has picked up on how to pronounce trigeminal neuralgia quite well! It warms my heart whenever he corrects someone who says “tri-whaaaat?”

There you have it. We have come out of the TN closet. Through our experiences, we have learned:

  • There is no right or wrong time to open up about TN. Everyone is different.
  • Give people a chance — you don’t know how they will react.
  • Knowledge is power. The more people know, the more likely they are willing to be flexible and understanding.

Will you regret opening up to people? Possibly, but we hope not. Will you have to answer more questions? Possibly, but awareness is spread one person at a time. Will people look at you and think, “wow, I never knew.” Possibly. But in addition to educating your friends, family and coworkers, you also may help someone by sharing your story. We on the YPC have a mantra: “I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” The only way to achieve that is to tell your story.

This article originally appeared in the Winter 2017 edition of the FPA Quarterly Journal, written by the YPC (Young Patients Committee).