I have a chronic illness, and I’m surviving a pandemic
By Clara How, May 07, 2020
For most of us around the world, wearing a face mask has become a mandatory part of our lives. For Amanda Young, 44, not only is a mask extremely essential, it is also a cause of great pain.
Over 10 years ago, Amanda was diagnosed with a chronic pain condition called Trigeminal Neuralgia, a very rare disorder of the fifth cranial nerve. When triggered, she experiences excruciating facial pain. One of the triggers is wearing a mask. The pain, she describes, is like getting “tased in the face”.
Some studies cite 12 out of 100,000 people in the United States have Trigeminal Neuralgia, but given that there is currently no public funding for research, the numbers might not be accurate. Many, like Amanda, often go undiagnosed or misdiagnosed for years.
Born and raised in Brooklyn, Amanda refuses to be pigeon-holed. She is a social worker, a fitness instructor and consultant, and an advocate of chronic illness and Asian American rights. She also has a message of positivity that she wants to put out to the world.
Sometimes I joke with other Trigeminal Neuralgia warriors that we have been preparing for self-isolation our whole lives. Before the pandemic began, I already owned several masks, which would be considered odd for many people.
Because I am an early childhood social worker who frequently meets with children and I have a low-functioning immune system, I wear a mask when I have to be around a coughing four-year-old. I explain to them why Miss Amanda has to wear a mask.
I used to stand out because I wore a mask, and have a neighbour who used to call me Zorro when he saw me with one on. Now, because everyone is wearing a mask, I fit in.
I was officially diagnosed with Trigeminal Neuralgia in 2008, but it took a long time to get there. I had symptoms since I was a teenager, but they were intermittent. To briefly explain: the trigeminal nerve is responsible for sensations and movements to the face, parts of the scalp, and jaw. With Trigeminal Neuralgia, something has caused damage to the nerve, or the tissue around the nerve, so that when it (mis)fires, you feel an indescribable pain.
One day, I was teaching a fitness class when suddenly it felt like I was getting electrocuted by the microphone headset. I removed it and carried on teaching, but the pain didn’t stop. I made it through my class and went straight to the hospital. I didn’t know what it was, but it felt like I was receiving electric shocks that went on for hours. It was excruciating.
Not only is Trigeminal Neuralgia rare, but it is also an invisible illness. It’s one reason why so many people in the chronic illness community feel like they are not seen or heard. 10 years ago, most doctors didn’t know what it was, or had never seen a patient with it. It got to the point where I had started to ask myself: “I know that I’m not crazy, but why aren’t people seeing what I’m feeling?” I had to see multiple neurologists who told me that I was fine, before I finally found someone who diagnosed me.
There are many triggers that can cause the facial pain, and they aren’t always consistent. For me, they include: eating, talking, sneezing, wind, rain, pressure, food temperature, stress and certain types of food. Because my pain is located only on the left side of the face, I had my head shaved on that side because the weight of my hair was causing pain. Brushing my teeth is the worst trigger and it can sometimes take me 30 minutes to get through it.
There are two types of pain. The classic type of pain feels like electric shocks that are intermittent and can last for minutes or hours at a time. The second, atypical type, feels like a burning, searing pain and feels like my face is on fire. This pain is constant, 24 hours a day, seven days a week. The longest flare-up I had lasted seven months, and I had to puree all my food because I couldn’t chew.
If I sneeze or even touch my face, it can trigger an attack. But when I am sick, the pain is much worse, because it’s usually tied to an inflammation that triggers the nerve. This is why I take so many precautions against falling sick, like wearing a mask.
Because a mask needs to sit tight against the face, the pressure makes the pain worse. But I know that it’s important to wear one, so before COVID-19, I made decisions based on cost and benefit. I knew that if I were to wear my mask, I would be in a lot of pain. So is the pain worth it, or do I take my chances being around a sick child? Now, of course, I just stay home. I only have to wear my mask when I go downstairs to pick up my mail, or on the rare occasion where I absolutely need to go out.
I’m lucky that I’ve found ways to manage my illness, but because it’s invisible, it’s harder for people to understand. When you see someone in a cast, it’s a lot easier to empathise. If you’re looking closely, you might see my face turn red, or occasionally twitch. You might also see my reactions to an attack, like a wince. But other than that, I look like a completely normal person.
This was one reason why I took seven years before I told anyone (other than family and close friends) about my diagnosis. I was anxious about how people would view me, whether I would lose my job, and how it would define who I was as a person, so I hid it from the world. It took me a long time to process and reimagine what my life would be.
Once I decided to share, I wanted to do it in a big way. I was connected to someone from the Daily News, and told everyone my story through an article. I was also featured in a piece by MSNBC, a process that took weeks of filming. Six weeks later, I put together a fundraiser for the Facial Pain Research Foundation and ended up raising USD23,000. I’m grateful to be able to have had that press and raise awareness.
That’s why I chose to share my story with anyone who would listen. People saw me as this strong, independent person who kicks butt in class and who also gives back to the community, but there was so much that I wasn’t showing. By putting myself out there, I hoped that it would allow people to face their fears, and to have that courage to be vulnerable.
Managing the pain is constantly a work in progress, but the best way for me is to understand that I don’t have complete control over it.
I can’t change things like the weather, but I can control things like my diet to minimise the effects of a pain flare. It took years of trial and error, but now my diet consists of no dairy, no sugar, no caffeine, no gluten and no soy. There are days where I will want to have sweets, so I factor in the pain and know I can’t make plans for that evening.
Sometimes I feel guilty for not going out with my friends or doing the social activities that I want to do. But I’m lucky to have a small circle of friends who understand why I can’t meet them, and who help me when I can.
For example, right now the odds of getting an online grocery delivery slot are low, so my friends are kind enough to give me their time slots when they do get them, so I don’t have to make the trip to the supermarket. As for my husband, it took us some time to adjust, because neither of us expected that he would have to support someone who has a chronic illness. There’s not a lot that he can do about the pain, but he’s great at helping me with the things that he can, such as cooking, cleaning, or driving me to the doctor.
People with chronic illness can feel like they are isolated because they don’t go out much, and not everyone understands, so I’m very grateful to have this small circle who does.
When processing my chronic illness, I also had to reimagine what my career would look like. I’ve always straddled both social work and the fitness industry, but there were moments where I realised that I couldn’t do what I had originally imagined.
When Hurricane Sandy hit Brooklyn and devastated the community in 2012, I was helping with trauma work. During a one on one session with a child, I was undergoing a flare and was in so much pain.
He looked at me and said, “Miss Amanda, are you listening to me?”
I was devastated. This poor child had lost everything, and here I am trying to be there for him, but I can’t even do that.
As for fitness, I used to teach so many high intensity classes and loved what I did, but my body couldn’t handle it and I knew that I had to make changes. I figured out that I could still do what I loved, but I had to do it in a different way.
So right now, I still straddle fitness and social work, but in different capacities. I was a manager of talent for Equinox (a fitness company that runs clubs and gyms in several countries), and I also develop programmes to train instructors. I am also a health and wellness coach and specialise in working with people who are navigating chronic illness. For social work, I now coach teachers on incorporating social and emotional development in the classroom.
I’m helping people to do the work I love, because I can’t do it all the time.
I would say that a lot of the reasons why I did so well over the years was partially down to luck, but it was also my positive attitude. I owe that to my mother.
She was so optimistic and encouraging. I watched her go through three types of cancer, and she always told me that being positive could help you get through so much. She really instilled that mindset within me. Even now, with COVID-19, I try to find the little things to be positive about. Because if you sit and really think about what’s happening, it’s overwhelming.
Staying indoors so much has actually been a good thing for me. Before the lockdown, I would have to get dressed and go to work. Now, I have more energy. Instead of travelling 30 minutes to get to a gym, I can go online and workout. People say that you should still get dressed before working, but for me, there’s no reason to waste energy.
The only challenge in working remotely is that looking at screens all day is very trying on my eyes. So I will occasionally turn the lights off, or take more breaks to rest my eyes. Lights often trigger pain, and because my eyesight has been affected in my left eye, I don’t see equally in both. Unfortunately, I can’t wear contacts in my eyes or wear glasses, because this would also trigger more pain.
Because I’ve been so accustomed to staying home, I see this as a great opportunity to help people manage their time.
I teach fitness classes for my colleagues over web conferencing on our lunch breaks, or host karaoke sessions. I want to remind people that there is always something good in every day, so I started a group chat with my friends, and every morning someone shares what they’re grateful for.
Another way that I’ve been using my time at home is to support fundraisers. The first one I ran was a fundraiser for my best friend, who is dying from brain cancer. We wanted to raise funds to help him carry on his legacy by building a mental health space for adults, and since I have a fitness background, I taught a week of online classes and called for donations.
We ended up with over 100 sign-ups and raised three times the amount we needed, so the excess was donated to relief efforts for COVID-19. I needed a break after all that teaching, but fitness fundraisers are something that I want to continue, and would like to donate to a different cause each time.
These fundraisers are my way of helping people who need help or who are underrepresented, to feel like they have a voice. For the Trigeminal Neuralgia community, I’ve become that voice because I’ve put myself out there. I consider myself very fortunate to be in this position: to have the supportive network that I do, and being able to continue working at my job and paying my rent even under lockdown. This is my way of giving back and having gratitude for what I do have.
I believe that if we can send out a message of awareness and positivity that can resonate with other people, they wouldn’t feel so alone. And in a time where there is a lot of uncertainty, it is what we need now.
Pictures provided by Amanda, and photographed by Renee Choi Photography and Anthony Cunanan Photography.
Another cause that Amanda is currently advocating for is the fight against the racism that is affecting the Asian American community. She spoke of violence that is taking place on public transportation and the fear that the Asian community is experiencing in the wake of COVID-19. On the rare occasions that she has left her home. Amanda herself has been spat at and shouted at to “Go back to your country”.
“As someone who is born in Brooklyn and spent so many years here, it is sad to see what is happening to our country. It enrages me that we can’t feel safe at home,” she says. Amanda is now working with the Asian American families in her schools who have minimal resources and who live in housing projects. She supports them through referrals to agencies, and provides culturally relevant practice skills to teachers.
She tells us: “I’ve never been prouder of being Chinese American than I am now.”
For more information on Amanda, visit http://www.facethechange.org/
My name is Clara, and you can find me at @clarahow on the Dayre app. On my personal account, I write about the changes that have taken place to my body over the years and how I’ve accepted them. I also share about my struggles with mental health, and how it’s an ongoing process.
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