This story is part of the Facial Pain Research Foundation’s series “Facing My Pain,” which shares patient and caregiver stories to combat loneliness, increase awareness, and provide information and insights to patients and practitioners. If you are interested in sharing your story as part of this project, please contact Hanna Shae Smith at hsmithwriting@gmail.com.

Kelsey Darragh’s job revolves around talking. All. The. Time. About everything. And she’s good at it, too – having created a candidly relatable, international presence on Buzzfeed, YouTube, TikTok, and other leading online platforms. So, it may come as a huge shock that she was diagnosed with neuropathic pain impacting her jawthe thing she uses all day for work. As a comedian, she can see the morbid irony of it. As a writer, podcaster, and filmmaker with an average viewership of at least 14 million per video, she’s not missing the chance to do something about it.

Because, as a human being, Kelsey has a story to share.

Unhappy Holidays

Kelsey is diagnosed with constant Type 2 Trigeminal Neuralgia, including flares of Type 1. She also experiences Anesthesia Dolorosa, spontaneous pain without stimuli, on the bottom half of her face. She is unique to many people with TN because she knows the exact trauma that caused her pain beginning in 2013.

Kelsey was no stranger to facial pain prior to her TN diagnosis. Since childhood, she suffered from temporomandibular joint disorder—pain radiating from the hinge joint which connects the jaw to the rest of the skull.

“I was a singer, musical theater major, I was on the morning show, news casting, did lots of talking stuff and I was always having constant pain,” Kelsey says. “And so, when I saw the orthodontist and the ENT, they all sent me to a maxillofacial surgeon.”

The surgeon suggested 19-year-old Kelsey have a portion of her fascia replaced—a “little hardware change out,” Kelsey says. This would be the first of a two-part operation that ultimately spanned years. Trusting the doctor, she underwent the first surgery in Florida with her parents. When she returned to college on the West Coast afterward, Kelsey did not experience as much joint pain anymore, but she still felt pain in her jaw muscles. In her mid-twenties, she returned to Florida for the second part of the surgery, a bilateral osteotomy to align her jaw’s bite.

The operation was scheduled for Christmas day. When she woke in her hospital bed, Kelsey immediately knew something was horribly wrong.

“I didn’t feel better. My bite didn’t feel right. I was in tons of pain,” she recalls. “They just kept telling me, ‘Well, you just had facial-trauma surgery. Of course, you’re going to feel pain. You’re supposed to feel this way.’ And I remember thinking, okay, I just need to get through this.

After a few days without improvement, the surgeon concluded that Kelsey’s jaw had been open too long on the operating table, causing swelling that resulted in her postoperative bite still not matching. He suggested re-opening her jaw for a third operation.

“We didn’t seek a second opinion. We didn’t think anything of it,” Kelsey says. “He went in and completely redid the surgery. You would think that would have been a big red flag. But I’m on (pain medication) most of the time … and my parents are like, ‘We need to get this right. We don’t want this healing the incorrect way.’”

She went back under the knife on New Year’s Day. Kelsey isn’t sure which of the back-to-back surgeries did the irreversible damage. All she knows is that at some point on the operating table, the third branch of her Trigeminal Nerve—the fifth cranial nerve extending in three branches over the face—was damaged.

“New year, new potentially disastrous life,” she says. “It’s been a very interesting journey trying to get out of that process of healing from the actual surgery and then to find this new way of life I have been given. And reconciling my feelings with the surgery, the surgeon, the life that I have now.”

In Her Bones

Kelsey became well-known as a video producer, performer, and development partner at Buzzfeed where she used her quick-wit and charm to curate viral content for the platform. Her job at Buzzfeed began approximately one month after that fateful final operation when she flew back to Los Angeles to begin her new life. Kelsey often worked seven days a week while dealing with persistent pain that alarmingly did not go away as the months progressed. She flew back to Florida for checkups. However, she could not seem to reach the surgeon who actually performed the operation. When her calls were never returned, she began to realize that perhaps the medical team was ignoring her.

“They kept telling me, ‘You have to wait a year,’” Kelsey says. “And then we find out a year later that the statute of limitations for being able to sue in Florida is one year. So, we, at this point, firmly believe he knew what happened to me and he was avoiding calling it what it was. It took a lot of self-advocacy and self-research and finding my own doctors to finally get diagnosed.”

Kelsey was officially diagnosed in 2016 at the Facial Pain Center in Cedar Sinai. “He was like, ‘Without a doubt this is what that is and it’s anesthesia dolorosa.’ Within the first day I saw them, that’s what they said. And I already had a hunch, and I knew in my bones, no pun intended, at that point that something is amok.”

Healing Agency

Type 2 TN (TN2) is characterized by constant pain often described as burning or aching. This is what Kelsey lives with on a daily basis. Type 1 TN (TN1), on the other hand, is characterized by intermittent pain flares that are stabbing and electric jolts. There is no way around it: Both are horrible. And Kelsey’s new reality included each type, not to mention the Anesthesia Dolorosa.

“It’s not comparable, right? Would you rather have these short, intermittent pain periods of these intense flares or the everyday, dull, aching, burning, stabbing of AD and TN2? They both just suck,” she says. “I’m still figuring this out, too. I still have really (crappy) days. I still see different doctors all the time. I don’t have a set, core care team that I love and go to for all my treatments. I’m sure, like most TN patients, I’m researching if there is another treatment out there.”

Kelsey’s research is extensive and varied. She’s tried treatments in Western Medicine—such as ganglion blocks and Botox—and more holistic measures such as micro dosing cannabidiol, laser therapy, and crystal healing. Her go-to therapy is getting a massage to break up scar tissue in her jaw. Kelsey documents each of these ventures on a number of her social media platforms, both to provide information for other pain patients and to raise awareness. For Kelsey, exploring these options is taking ownership of her well-being by seeking out options that work for her. In this way, she achieves agency in her care and remains hopeful for her future.

“We don’t know what science is to come. What plant healing can do. There is so much out there still and that is how I remain quite hopeful. I am confident there will be something in our lifetime,” she says. “Pain is such an epidemic. It’s such a problem. Not just with TN, but I think there are too many people suffering that outweigh the Big Pharma check. Where someone is going to go, ‘This is (messed) up, we need to do something about this ourselves.’”

In 2020, Kelsey published “Don’t F*cking Panic: The sh*t they don’t tell you in therapy about anxiety disorder, panic attacks & depression.” In this debut book, which also couples as an interactive workbook, Kelsey digs into her personal journey with mental health and provides resources to help people on their health journeys. Establishing a mental wellness practice and investing time in improving her mental health the same way she prioritizes her physical health is imperative for TN patients and anyone, Kelsey says. She has invested in learning about mindfulness, pain reprocessing, and breath work, all of which have contributed significantly to her long-term well-being.

“My brain is powerful. All our brains are so powerful,” she says. “We don’t even know the potential of our brains yet.”

In The Open

Kelsey lives her life in the spotlight like few other TN patients do, being very open about not only her diagnosis but other aspects of her physical health, dating life, sexuality, daily happenings, and career. Among numerous other accomplishments, Kelsey produced the comedy ‘Where We Are’ with Sundance in 2019 and is currently developing a documentary with Springhill Productions about mental health. She hosts the podcast ‘Confidently Insecure’ and currently has 125,000 subscribers on YouTube, 113,000 twitter followers, 374,900 TikTok followers, and 422,000 Instagram followers. Sharing her TN journey with this massive audience has really been a no-brainer for Kelsey. It’s just what she does.

“It didn’t really have anything to do with the size of the audience that was watching. It was more just the passion I felt about it inside,” she says. “I’m lucky that I had people to watch and carry the message and give it the platform that it has. … I can’t not talk about it. It’s such a big piece of my life and with mental health, you know, it’s the same thing. Who am I beating by keeping this in? What am I proving by not talking about it? It’s quite the opposite, actually. It took a lot of strength to say, ‘This is a really vulnerable part of me.’ And I’ve never known anything different with being on the internet. I started by being very open about my life.”

Initially, Kelsey says she experienced anger surrounding her diagnosis and how it could impact her life and career. She was afraid of being on set with hundreds of people, with thousands of dollars involved, and suddenly experiencing a flare. She was scared that friends and family would abandon her when she had to cancel plans. Living with this fear day-to-day could have sent her into hiding—leaving before anybody could leave her. However, Kelsey’s career forced her to confront these deep-seated feelings head-on and find out what was true and what her anxiety had convinced her was true.

“It put it all right in front of me,” she continues. “It’s like, ‘You will deal with yourself. You will heal and you will be forced to reckon with your body every day.’ I don’t think I would have quit drinking if it weren’t for my chronic pain. I don’t think I would have started taking care of my body. I don’t think I would have started doing yoga. I don’t think I would have meditated. There is all this stuff in the last six years I started doing because of it and I am excited to see what else this will lead me to discover despite that it means living with it. … It never caused anyone to stop hiring me or stop being friends with me or stop loving me. I just had to learn by doing and prioritizing my health.”

This has led Kelsey to begin writing her second book about chronic pain—there is no title yet and she’s still in the manuscript phase, but she’s both excited and intimidated by this next journey in sharing life with others. With this book, she aims to fill the gap she felt consistently as a person with TN: mental health care.

“I think the biggest component that’s missing out of so many of these books and articles and Instagram accounts and research papers is we’re missing the mental health angle of it,” she says. “We’re missing what chronic pain does to the brain and what patterns we learn as a result of experiencing pain over time. It doesn’t take long to develop a habit. It doesn’t take long to develop a routine, and what can be classified as chronic pain is three months or more. And I’m sure anyone reading this or experiencing this is thinking, ‘Yeah, I’m 20 years in, I’m 50 years in’ of back pain or jaw pain or whatever it is. And we only knew a couple decades ago of neuroplasticity and that the brain can actually change. But it’s not just that it can change, but that it must change. And we can change it. And that’s the best news of all time that we can use our minds to heal, and we can use our minds to manage and that is the aspect I’m really looking forward to learning more about and writing about in the new book. Yes, this is the card we’ve been dealt and, no matter if you’ve been dealing with it for three months or 30 years, it doesn’t mean today things can’t start to be different for you.”

Kelsey’s first book is available NOW!

Day by Day

Every day looks different for Kelsey. She may be writing the next chapter of her manuscript, recording a podcast, filming a comedic TikTok, scheduling a doctor’s appointment, trying a new therapy, or just lying on the couch nursing a flare-up moment by moment. And according to Kelsey, that has been the key to her well-being: learning to take each day at a time and focusing on the next step. Thinking long-term is overwhelming, unhelpful, and can lead to depressive and dark mental states. So, she focuses on what is happening in the moment and being grateful for what she has. Kelsey finds immense gratitude in her support network of other people with chronic pain. However, she is also determined to find joy and purpose outside of anything related to TN and advises others to be aware of filling their lives with things besides their diagnosis.

“I would definitely caution some of the groups that are out there for the facial pain community because they can be really depressing,” she says. “I know it’s good to reach out when you need help and when you’re in a dark place. But diversify your resources. Make sure there are things on your feed and in your news stories and in your email and your text chains that are positive and people that uplift you.”

It’s easy to feel like one’s life is over after a diagnosis of Trigeminal Neuralgia. Kelsey remembers doing her initial Google searches and finding little to no information, horrifying nicknames for the disease, and few treatment options. However, fighting through despair and finding hope is “an act of courage,” she says with assurance. And it’s well worth the effort.

“It’s very easy to get a negative outlook. I think the harder, braver, stronger thing to do is to stay positive,” Kelsey says. To those who just received diagnosis of Trigeminal Neuralgia, she encourages perseverance and courage. “Your life is not over. A new chapter has just begun. Keep your head high because a diagnosis is just a word, and at the end of the day, it’s what we give to its meaning. … I would encourage people to actively seek out the good in what’s happening, with the stuff that the Facial Pain Research Foundation is doing, and what positive things that are to come out of it. I don’t think the word should change the way you feel. If anything, it should inspire you to look for more. Look beyond it. Figure out what else is out there.”

For Kelsey and all those like her, there is so much life yet to live.

 

Author byline: Hanna Shae Smith is an award-winning journalist and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she is the manager of the SOARING into Strength Positive Health Initiative, studies psychology and global health at Arizona State University, and is a research assistant studying pediatric behavioral health at the Arizona Twin Project.