6.1  Telling Our Stories

 

By Pari Shah, Rachel Chance, and Raymond F. Sekula Jr., MD (USA)

Editor’s Note: Before we read five lived experiences of people with Trigeminal Neuralgia (TN), Shah, Chance, and Sekula write about the real costs of TN. To some extent, we all feel the challenges: pain, isolation, loss of a job, chronic fatigue, depression, lack of adequate health insurance, and the perceived or real burden on family and friends. The authors back this up with vignettes they found on social media, namely, on blogs such as “The Mighty” and “The Pain Corner” and on youtube.com. Despite these challenges, we are strong. We are not alone. We belong to a community through the Trigeminal Neuralgia Association Australia that advocates and educates. We have jobs, raise children, climb mountains, and make music. We are artists and grandparents. We are educators, judges, lawyers, doctors, writers, and business owners. Through conferences and support groups, we form strong friendships with others who have TN. We are a force to be reckoned with within the public policy arena.

“You can either let it defeat you, or you can rise up against it… If you’re living with trigeminal neuralgia, you are one of the strongest people in the world”—The Pain Corner

Every year in Australia 1,400 people are diagnosed with Trigeminal Neuralgia (15,000 in the USA), a diagnosis of extreme facial pain. They describe the pain in various ways, including “gnawing,” “stabbing,” and “electrical.” TN is known for its insufferable episodes, which cause emotional and physical limitations to peoples’ everyday lives, thereby diminishing their quality of life. TN may change the dynamic of families, trigger financial insecurity, and take years to diagnose, thereby significantly impacting one’s mental health. Individuals battling TN are considered some of the “strongest people in the world.” Many are advocating for themselves and others by telling their stories. Through background research and interviews with people with TN, we have tried to capture their experiences of battling TN.

This overwhelming, uncontrollable, falling-to-your-knees kind of pain can dominate one’s life through repetitive attacks. Whether it’s driving your child from school with an episode waiting for you around the corner or attempting to focus at work when the seemingly benign air conditioning triggers the trigeminal nerve, TN forces individuals to alter their lifestyle. Even though people with TN might prefer to stay within the comforts of their homes to avoid additional external stimuli, most have jobs to attend to, families to take care of, and a desire to return to normal life.

When interviewed, Kerri Salas, an individual with TN, stated, “I can’t continue to have a work life… it’s so hard with trigeminal neuralgia.” Going to work is a routine that provides structure to many peoples’ lives and imparts a sense of normalcy; however, work may be out of reach for people with chronic pain or intense episodes. A young woman who earned her doctorate in physical therapy took an extended break to undergo deep brain stimulation surgery for TN. Despite her original intention to return to work after 2 months, she has yet to do so because of her compromised abilities due to TN. An aspiring actor in New York City underwent microvascular decompression surgery, which was complicated by left-side paralysis in the face. This complication ended her career. Another woman, without private health insurance and after working hard to develop an independent business, had to close down her company to fund her TN surgery; she ran through all of her savings. The economic instability of an unreliable income creates additional stress for people worrying about paying for surgery, medications, or fees for travel to TN specialists.

Individuals with TN who support their families feel incredible pressure to suppress their pain and carry on with their responsibilities. Although part of being an adult comes with balancing several factors such as work, family life, and self-care, adding a chronic pain shifts all those other factors to the periphery and demands central attention. As Samah Khan wrote in The Mighty blog, “when you’ve spent your whole day battling your own body along with trying to be civil to people you can’t avoid, like family, you are too worn down and exhausted emotionally to partake in conversation” . When researching TN and interviewing people with this condition, we noticed that TN often disrupts family dynamics and relationships. Salas explained, “I do think [TN] does [interfere with my relationship with my kids] because there are times I can’t be as affectionate as I would like to, or I have to push their affection down because they don’t understand it’s hurting me — it’s a struggle.” TN pain and its effects may create a metaphysical barrier between people with TN and those around them. This isolation takes a toll on their mental health as they feel increasingly distanced from the people closest to them. A large part of the battle of TN is overcoming depression and learning to accept help from the community.

One patient said, “Just as I’ve learned to live with this disease, my husband and my kids [have] learned to live with it too; it’s never just the person with TN.” When one family member faces an issue, the entire family is affected. With any chronic illness, the family must make sacrifices to ensure the health of their loved one. With TN, the sacrifices can be financial, funneling all savings toward surgery and medication, or they can involve self-care, prioritizing responsibilities for the person in pain over oneself. With all that attention, patients often develop “self-perceived burden” syndrome, where they view themselves as a liability hindering their family’s progress. They may perceive themselves as a chronic burden to their family and, therefore, try to minimize the appearance of their suffering. This feeling of burden is experienced across all age groups and medical morbidities. For example, the aspiring New York City actor mentioned previously had lost contact with close family during her TN process. She needed her eye sewn shut because of chronic infections resulting from TN surgery and treatments. Her sister refused to allow her son to see this, fearing that it would scare him, so she forced the actor to wear sunglasses around the family. When her nephew grew curious about the eye, she finally showed him. Her sister saw this interaction and forbade contact between the two. Currently, the actor runs her own online community called “Women in Pain,” a support group recognizing women in similar situations. She has shown that a supportive community is of utmost importance. Being part of a community can improve morale and help tackle the complexities of TN, many of which are not clearly appreciated by others. As another example, a study from the Iran School of Medical Science discovered that elderly people with chronic pain had been suppressing their pain to feel less like a burden towards their families. When researchers asked a group of individuals with chronic pain why they did not want to continue life support, 93% responded with comments such as the following: “I worry that my caregiver is helping me beyond their ability,” “I worry that I will be considered a ‘huge problem’ for my caregiver,” and “I am concerned that my caregiver’s health will suffer as a result of my care” .

There is often a stigma associated with invisible disabilities — a psychological, physical, or neurological condition that is not easily recognized based on someone’s external appearance. Examples include schizophrenia, diabetes, epilepsy, and TN. More than 5 million Australians (42 million Americans) have disabilities, and an overwhelming 96% of them are invisible. It is difficult to make anyone understand something they cannot see; therefore, the responses to encountering someone with these disabilities can range. Many people may respond by offering advice such as to take up meditation or to stop eating certain foods, despite not having any real expertise. Others may perceive people with these conditions as malingerers or weak individuals. Even families and doctors sometimes underestimate the intensity that their relative or patient is experiencing. The challenge of convincing others that you are experiencing this pain makes the diagnosis process frustrating—and often drawn out.

When first experiencing TN pain, often localized near the jaw or mouth, where a branch of the trigeminal nerve is, many people go to see a dentist for help. Dentists, sometimes unaware of this relatively uncommon condition, may perform unnecessary procedures in an attempt to alleviate the patient’s pain. Salas recalls that she “had two root canals in [her] same front tooth that apparently never needed it.” After much time and distress, a path of redirections and consultations will usually lead patients to specialists, such as neurologists and neurosurgeons. Meanwhile, all this time in between is filled with feelings of confusion, hopelessness, and pain. “I feel like I have been through the ringer, like I am actually 60 years old when I am 37,” Salas describes. The frustration persists throughout misdiagnoses and doctors processing the subjective pain that the patient is enduring. This often leaves people in pain feeling confused and invalidated. One person shared, “before [my diagnosis], I was told ‘well you have migraines, it’s okay,’ and it made me feel like I was weak and unable to deal with something that other people could.” Another individual was even told that they needed to floss more, and others have been misdiagnosed with sinus infection, mononucleosis (often referred to as mono), fibromyalgia, and other conditions. These stories are all similar; they are filled with misdirection and confusion that leads the person in pain down a path of prolonged misery. Ultimately, reaching a TN diagnosis is based heavily on medical history, symptom descriptions, and physical examination. It also relies on ruling out the possibility of other diseases such as postherpetic neuralgia, cluster headaches, and temporomandibular joint disorders. Diagnostically, a magnetic resonance imaging (MRI) scan is often performed, but MRI does not always clarify the diagnosis. The time to diagnosis ranges for each patient: For Kerri Salas, it took two years, whereas for another patient, it took around two decades. Despite advances in medical technology and information, the path to a TN diagnosis remains delayed and complex.

Because of this delay of diagnosis and the stigma around invisible illnesses, acquiring disability insurance for TN can be extremely difficult. Many disability insurance services consider the doctor’s assessment of a patient’s pain much more seriously than a patient’s description of their experience. Because TN patients often struggle to get a diagnosis or do not meet criteria for impairment, they cannot receive disability benefits. Even when they do receive a diagnosis of TN, the effects and pain of TN often do not meet the application’s criteria. When Kiz, the author of The Pain Corner, a blog sharing her journey with TN, applied to the Personal Independence Payment (PIP) program, a service that financially assists people with long-term disabilities in the United Kingdom, she scored 0 points. She did not qualify for any services, as her TN diagnosis did not align with what the program defined as a disability. Disability across the world has many definitions, most related to employment. In the Netherlands, individuals qualify as having a disability if they are unable to earn as much as a “trained healthy” person in their community. In Germany, disability is defined by the country’s social code as people earning less than a fixed income. As seen through these definitions, disability is more of a social construct, and these national programs attempt to base their judgment of disability on how much or how little people contribute to society, rather than the hardship that the person is enduring. When asked about the Canadian Pension Plan (CPP), Cathryn Boadway, a TN patient, responded, “It all seems very much focused on whether or not I could be working, as opposed to whether my health and overall wellness is improved.”  Many find disability applications daunting because of their time-consuming nature and long waiting process. When Salas was asked if she had signed up for the US Social Security Disability Insurance (SSDI) program, she stated, “No I haven’t [signed up] because I heard it was so difficult that it is not worth trying.” Moreover, because TN is not listed as a disability on the SSDI website, it takes an extra step to prove to the program that you deserve the benefits.

[In Australia TN is also not automatically included on a predetermined list for the Australian National Disability Insurance Scheme (NDIS), as the scheme does not approve applicants based on a specific diagnosis. Instead, eligibility for the NDIS relies entirely on how the condition impacts your daily life and whether it causes a permanent, significant functional impairment. As it is generally not seen as ‘permanent’ it is very hard to obtain.]

A process that requires the stamina of TN changes one’s perception of others. Patients report that having TN has given them empathy for others suffering from disabilities or chronic pain, saying, for example, “I know everyone suffers in some way, and I just keep hoping people do not have to deal with this pain.” TN shapes a patient’s life socially, economically, and psychologically, leading to a reflected view of the world. As Salas described, “Being strong is something we have to do; the world has to be strong, everybody has to, or we just get sucked up.” Perseverance is key to battling TN. You advocate for yourself either in the doctor’s office or through the disability benefits process, attempting to make others understand the extent of your pain. When asked how she continues to have hope through such a difficult process, Boadway explains, “I do not believe that we can really live … without an underlying current of hope in our lives.” She shared a quote from Chronically Honest, a popular Instagram account that illustrates the hardships of chronic illnesses, that she believes summarizes her view on hope while having TN: “It is so hard trying to balance remaining hopeful with not getting your hopes up too high due to the seemingly inevitable letdown”. This ability to continue to have an optimistic attitude toward the future, acknowledging that there is a part of your life you cannot control, is inspirational. If you look at the comments on the YouTube video Life with Trigeminal Neuralgia – Cathryn’s story, a common sentiment is “I’m also going through this, thank you for sharing.” As TN patients continue to share their stories through research, interviews, and social media, they realize that they are not alone. “When someone’s willing to be vulnerable and let people in, it brings together this sense of community”. We thank all of the patients who are willing to tell their stories and appreciate this opportunity to share them with the world.