By Hanna Shae Smith
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 firstname.lastname@example.org.
You may never know what a person is enduring when they are viewed from the surface only. What might be occurring beneath the smile and the steady gait; the personable speech and the ability to seemingly do it all?
For example: Anna Dilworth lives in Sweden and is a single mother of four boys, caregiver, assistant nurse, and former social worker. She enjoys outdoor activities, going for long walks, and spending time with friends. On the surface, it may seem that nothing is wrong. Yet, she is diagnosed with a rare chronic pain disorder often called the worst pain known to humankind: Trigeminal Neuralgia.
Dilworth first noticed the pain when chewing on the right side of her mouth, which led her to seeking dental attention. However, due to expenses and a lack of insurance at the time, she was unable to pursue that avenue further. She returned to the dentist to repair a broken tooth sometime later, and although she felt a measure of relief, she still experienced pains periodically.
“(The dentist) fixed it and said, ‘I don’t know how this will end, but I hope it will work out,’” Dilworth says. “On and off I had pains, but nothing more really happened.”
Later, however, the pain became persistent near her ear, and was most noticeable when she went for walks outside in the wind. Simultaneously, another storm was brewing on a global scale: The COVID-19 pandemic.
In quarantine, Dilworth was initially unable to schedule an appointment with a physician due to health risks. Through over-the-phone assessments, they ascertained that perhaps the pain was occurring as the result of inflammation in her ear. However, Dilworth knew this was not the case and that something more was wrong.
“It was really terrible. I think they thought, ‘She’s just a pain,’” she says. “I got medication and it didn’t help. … I kept calling and went to a dentist twice for X-rays. She couldn’t find anything.”
In May 2020, Dilworth was able to secure an appointment with an ear, nose, and throat physician, who made the initial suggestion that Dilworth was experiencing symptoms of Trigeminal Neuralgia. By the time she was referred to a neurologist, Dilworth’s pain was constant.
Dilworth attempted Botox treatments, which she describes as nightmarish. She was placed on two medications and although she considered surgery, COVID-19 once again prevented her from pursuing that option. When her sons tested positive for the virus, they all became strictly homebound.
“I can’t go to the hospital because of this. I have to make sure we’re all in good health,” she says.
Dilworth and her children all survived the virus, though some are working through residual side effects. She currently is preparing to get her second vaccination against the virus.
In the height of the pandemic, Dilworth agreed with her surgeon to reconvene on the topic of a balloon compression surgery later when it was safe to do so, however ultimately decided not to pursue surgical intervention – citing uncertainty as the main influence in declining the operation.
“If you’re not positive about it, I don’t think you should do it,” she says. “My doctor supported me and thought it was a good choice.”
Currently, medication is her primary form of treatment. Initially Dilworth says she was very reluctant to take the pills for her symptoms and grieved the thought that this may never change. A former social worker, Dilworth cites her previous work as influencing her fear. However, she came to the realization that the medication is now part of her life, and she does her best to work with it, not against it.
“I thought, ‘Well, I have to deal with it,’” she says. “I had to stop telling myself and look at myself like an addict. It might come from where I worked and what I’ve been working with. And now it’s like, well, I need it. I can’t live without it. … I think I will never be able to get off the medication totally. Somehow, I will make this work.”
In addition to facing the physical symptoms of pain from TN, Dilworth also had to address the mental and emotional changes that came with being diagnosed. Dilworth is a single mother of four sons, including 12-year-old twins diagnosed with autism who are dependent on their mother for care.
“I’m by myself and I thought how will I manage through this? Especially because I had pains 24/7 and I was lying here trying to pull myself together and get everything done and I was making a lot of mistakes. Forgetting bills,” she says. “It was difficult to tell people around you about something that they can’t see. It’s like, ‘You’re overreacting; you look OK.’ Does it really exist? Are you sure it’s not psychiatric? Is it real? It was so difficult. You wake up in the morning and night and it’s really killing you and you think, ‘Am I going to be like this forever? I don’t want to be like this forever.’”
At first, Dilworth says she had a very difficult time finding people who would believe that she was experiencing such high levels of pain. It was frightening to her that someone might not discern what she was going through and that she would not receive aid. Initially after diagnosis, she felt very dark about her situation and was uncertain if there was ever going to be life after diagnosis. Eventually, she realized that pain could be integral to her life for the rest of her life. This led her to a crossroads.
“I saw no light. I started to throw away things at home, preparing to die,” Dilworth says. “I have learned to accept TN, that it might be a part of my life, but I am determined not to let it steal my life. … It can change and, for me, it’s changing now because I feel I want to live. I have so much more to give. I am not my pain. The pain is not going to take over my life. … Remember, you are not your disease. Don’t lose yourself and your hope. Try to hold on to things you like and don’t close your door for people who are there for you.”
Dilworth encourages others who are diagnosed with TN to take time to accept what has happened and be vocal about what you need from your support team and medical team.
“I’m sorry that you got it, and I believe it,” she says. “Take your time to accept it if you can and take care of yourself. Speak to your doctor and don’t be afraid of asking all those questions. Don’t be afraid to speak against them if you don’t think it’s right. Don’t be afraid to ask for help in all of this. If you feel a medication doesn’t work, keep on asking for help.”
Dilworth also admonishes that a person diagnosed with TN should be aware that relationships can shift, sometimes drastically. She says that some of her friends and family are no longer part of her life as a result.
“But, the real ones have stayed,” she says.
Her relationship with her sons as also shifted, and she has attempted to help them understand what has happened to her so that they can be better equipped to handle the situation.
“It’s been a hard time for them, as well,” she says. “And difficult to understand because they can’t really see it on the outside apart from I’m tired and all this.”
Before COVID-19 and her diagnosis, Dilworth was a social worker, however, she is not able to return to her previous job. She also previously worked as an assistant nurse and secured employment part time at a senior home and working in behavioral health with youth. She says that sometimes she struggles with memory on the job, including occasionally forgetting to take her medication.
“I find myself sort of forgetting things and I get this headache and sort of ask myself what’s wrong now?” she says. “I look at my watch and realize I should have taken (the medication) two hours ago. I think that’s the biggest issue now. I can live with that.”
Dilworth used to be a morning person, however, finds that because her pain is worse in the mornings, that she’s transformed into having to do more in the afternoons and evenings. Her work has been accommodating with this need.
Working in the senior home has aided in providing perspective and a welcome distraction, as well, Dilworth says.
“It gives so much to go there every day and see them and work with them and give them support,” she says. “Because it makes me not sitting here and just living in the stress that I lived in before. It makes you forget it for a while and it’s important to find a way back to normal life.”
Dilworth says that it has been imperative for her to identify triggers and ascertain ways to maintain her symptoms in daily life. She tries to find activities to distract herself in quarantine and from the pain. Her social life comes in the form of a few friends who she enjoys walks with and who are conscientious to always keep her active.
“I have a few friends they I worked with before and they have stood by my side. One she calls me every day or every second day and tells me to come out for a walk. Don’t sit in, go for a walk,” she says.
She also enjoys biking and has found ways to reclaim joy in hobbies by being more strategic with how she participates.
“I think I’ve sort of learned to listen to my body more,” she says. “When I need to take a rest, I take a rest. I don’t try to push it too far.”
Dilworth is a member of a Facebook support group for people with TN in Sweden. In the group, they discuss surgeries, medications, and navigating the health care system. She says that access to care is difficult in Sweden, and so she plans to travel to the UK when it is safe to do so and pursue treatment options there. Dilworth says that she believes her situation and current outcomes would have been different had her symptoms not began occurring simultaneously with the pandemic.
“It really ruined my chances to get help from the beginning,” she says. “I think Corona had a big impact for many people who needed help.”
Becoming educated on TN has been pivotal in her ability to accept her situation, Dilworth says. She vivaciously reads literature and watches online videos regarding her diagnosis which have aided greatly in moving forward with her life. She also has put effort into maintaining a positive mindset as she faces her new normal.
“If I get a bad thought, I talk myself out of it,” she says. “I try to turn it the other way – see it from a different way and it usually works. I have been training myself for it. I think I’ve always looked at things in a bad way and it doesn’t help. … Life goes on, that’s all.”
Being diagnosed with TN has shifted Dilworth’s worldview in many ways – regarding relationships, her career, her daily schedule, and how she views and interprets interactions with others. She also learned that you can’t judge a book by its cover – or the level of pain a person is experiencing by their outward appearance. You never know what someone might be going through on the inside.
“It can happen to anyone. If you can’t see it from the outside, it’s there and it taught me that, in my profession or when I meet people, I think I’m more open for what I can’t see,” she says. “I hope to be more openminded for what is under and beneath; what I can’t see and what they don’t tell me. I learned that having this and seeing how it affects you and how the pain affects you. I realize that many of the people I met at work aren’t what I see really.”
Author byline: Hanna Shae Smith is an award-winning journalist, researcher, psychology student, and daughter of a person with Trigeminal Neuralgia. Smith lives in Phoenix, Arizona, where she studies psychology and global health at Arizona State University and is a research assistant for pediatric behavioral psychology studies at the Arizona Twin Project.