‘As if starting high school isn’t stressful enough, I had a condition which could KILL me.’: Woman details journey with Long QT syndrome, anxiety, depression

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“Hindsight is an interesting thing. It brings up so many what-ifs about one’s childhood. What if I had known the term ‘anxiety’ as a child? What if somebody had seen signs of depression in me sooner? What if I had known there was help available? What if I had only known that what I was feeling was a cry for help?

young girl smiling
Courtesy of Jamie Johnson

As far back as I can remember, I was dealing with anxiety. However, there are so many pieces of my life story that made it difficult for me to realize I was truly struggling with my mental health. I grew up the 90’s, when mental health wasn’t openly talked about. This made it so I didn’t have the vocabulary to describe my emotions to anybody, not even myself. I was also a competitive gymnast growing up. The culture around gymnastics was to be tough, because there is no time or space for weakness. Crying was the biggest form of weakness; so I learned early on to not cry in front of others. So not only did I not have the words to tell somebody how I was feeling, but I also didn’t have the visual cues to show others that I needed help.

I was a gymnast up until high school when I gave it up to savor what was left of my childhood. I longed to feel normal by doing school sports and hanging out with my friends. Little did I know how abnormal my high school experience would be. The summer before my freshman year, I was at church camp with my siblings, cousin, and friends having the time of my life! During our final evening worship, I passed out and was taken to the hospital. The doctors brushed it off as dehydration and let me go. Soon after I started my freshman year, I passed out after band rehearsal and was taken to the hospital again. Since this wasn’t the first time I’d passed out, they did a few more tests and didn’t like what they saw on the ECG. An appointment was scheduled for me to be seen at Seattle Children’s hospital in the cardiology department. It was there I got the diagnosis of Long QT Syndrome, a potentially fatal heart condition if not closely monitored.

young girl doing gymnastics
Courtesy of Jamie Johnson

As if starting high school isn’t stressful enough, I had to navigate it all with a newly diagnosed heart condition. To make matters worse, I had heard of this particular heart condition once before when I witnessed a fellow cross country runner pass away after suffering cardiac arrest due to Long QT Syndrome. At just 14 years old, I now knew I had a heart condition that could kill me. If I didn’t feel the effects of my undiagnosed anxiety yet, I was sure feeling it now. I was taken out of PE class and was not allowed to participate on the cross country team any longer. I was also treated with extra care in regards to band rehearsal and taking extra time, if needed, to get from one class to another. The normal high school life I craved was taken away from me and I still didn’t know how to voice my feelings about it all. I was determined to be tough through it all and not let anybody see me cry.

Throughout the rest of high school, there were countless visits to the ER, appointments at Children’s Hospital, heart monitors, and different medications to try and keep my heart rate stable. I went along with it all while trying to be a good student. Since my cross country career had been cut short, I tried out for the bowling team and the golf team since they were sports that wouldn’t raise my heart rate. The bowling team in particular ended up giving me the best memories I have from high school. And I never would have joined the team if I didn’t have a heart condition.

Yet another life decision I made due to my heart condition was where to apply for college. I’d had dreams of going to school in New York to study fashion and one day become a fashion buyer for a big company. My parents and I knew it was best for me to stay closer to home in case I ever had a medical emergency, so I applied only to in-state schools. Seattle Pacific University is where I ended up going, and it was the perfect fit for me! Hindsight, of course, tells me it was the only school I was meant to be at all along. It’s where I met my husband, who also hadn’t planned on attending there, but gave up his basketball dreams after a sports injury. So we were just two kids who reeled in our big dreams because of medical issues – we were meant to find each other!

I’m lucky to have met Trustin, my husband, when I did. College was insanely stressful, I was living on my own for the first time, and I was still navigating a life with a serious heart condition. Trustin became the voice of reason through it all. He could see where I was struggling the most and encouraged me to get help. There was a counseling center on campus that I finally went to, and it was there that I was given the tools to talk about my emotions. I finally had the words I needed to tell somebody I needed help. Anxiety and depression were the diagnoses I was given and it felt like a weight lifted off my shoulders. This was the first time I was being told that the amount of sadness, hopelessness, and anxiousness I was feeling didn’t have to be my normal feelings anymore. When I was offered the chance to take medication for my mental health, I was more than happy to take it. I have always felt so lucky that medication truly helps me; the realization that I may be taking medication every day for the rest of my life doesn’t bother me. This was the first step to taking control of my mental health.

young couple on wedding day
Courtesy of Jamie Johnson

A couple years after graduating college and getting married, it was brought to my attention more information was being learned about my heart condition. I opted to get genetic testing done again now that science had come such a long way. My results came back with some interesting findings. Long QT Syndrome was now categorized into multiple types, and my genetic mutation put me in the category to have Type 2 Long QT Syndrome. In short, my heart rate is triggered by my emotional stress. This news was difficult to process, because I was being told now it was safe for me to participate in strenuous sports, like cross country, which I had sadly given up in high school. On the other hand, I was being told that protecting my mental health is what will keep my heart healthy. It was impossible not to think about the what-ifs, even though everything up to this point in my life worked out just the way it was meant to. This emotional rollercoaster only worsened my anxiety and depression, which prompted yet another change in medication. When the medication works well, it feels like life is as it should be, and I might be feeling like a normal person. I’ve learned the hard way that life is constantly changing, so the medication won’t be perfect forever.

The biggest eye opener in all this new information was that my mental health, which I knew had always been suffering, was the largest contributor to my heart condition. I can look back now and remember times when I passed out at school and there was a big test or presentation that same day. How did I not piece together that I must have been severely anxious every time I had a heart problem at school? I’ll say it again, hindsight is an interesting thing. After all these years though, I finally knew how to take control of my overall health. However, ‘knowing’ and ‘doing’ are two very different actions.

It wasn’t until after my first daughter was born I decided to try therapy again. My medications weren’t helping me the way they did before pregnancy, and I needed more help. As somebody who studied Psychology in college, I feel like everybody should go to therapy at least once just learn more about themselves. With that being said, therapy is tricky for me because of my gymnast mentality that will forever be ingrained in me; I want to remain tough and I want to say all the perfect things that the therapist wants to hear. Of course, this isn’t how therapy works, which is why long-term therapy isn’t the best route for me. This particular time in therapy, however, brought up an interesting diagnosis of Bipolar Disorder. I met with a psychiatrist to get a second opinion and it was suggested that I have cyclothymia, a mild mood disorder in the category of bipolar disorder. More pieces of my inner self were falling into place and helped me feel more complete. Putting labels on people is typically frowned upon in society, but I found that I thrive when given more labels because it’s just another piece of my life puzzle.

pregnant woman in purple dress
Courtesy of Jamie Johnson

I discontinued therapy visits during my second pregnancy because my pregnancy hormones get me feeling like a completely normal person! After my second daughter was born, I struggled more with depressive moods than ever before. I started back on a new medication, but then the pandemic hit. Life was so far from normal and, like most others, I didn’t know how to cope. Then a few months into the pandemic, my grandma passed away. My life was shattered. Here I was with a life many people only dream of, the most loving husband, and two beautiful daughters, and yet I was feeling hopeless and numb. Nobody can fully prepare you for the grieving process, but grieving for a loved one during a pandemic is almost unexplainable. I knew in my heart she was gone, but because I wasn’t seeing much of anybody in person, it was easy to trick myself into thinking she was still here. It’s been a year now since she joined my grandpa in Heaven and I’m still working through the very early stages of my grief.

As I work through this pain of losing my grandma, I am reminded of how lucky I am to know the importance of mental health. In my situation, my mental health weighs a bit heavier on me with the effect is has on my heart condition, so I take it very seriously. My hope is that I can inspire others to take their mental health seriously as well. As a mom, I get to help my children identify their emotions, learn that expressing your emotions is healthy, and getting help with your mental health is a powerful tool. If only I had known all that – you know, hindsight.

young woman with her granda
Courtesy of Jamie Johnson

My family is still keeping a low profile as the end of the pandemic inches slowly closer. I’ve been able to see more friends and family in person, which always helps brighten my mood, but most days are still spent at home. When I spend the entire day at home with my daughters, I try to do one small thing for myself each day, whether it be drinking my coffee alone, watching tv by myself, or making more content for TikTok! My goal is to make time for myself each morning to make sure I am giving the healthiest version of myself to my children throughout the day. Those struggling with depression understand all too well the difficulty it can be just to get out of bed each morning. I have felt that more this past year than ever before, which is why my goal of a quiet morning alone is a very big goal!

I’ve spent a good portion of my adult life looking back on my childhood and wishing things were different. All the changes I would make to my past involve improving my mental health, which is why I’m doing what I can to make changes now. While I may not have the answers on how to extinguish my mood swings, or delete my depressive episodes, I know I have the tools to slowly improve. The knowledge of my mental health and the realization that I can make improvements is something I hold onto daily. It’s the hope I need to keep moving forward.

couple with two kids sitting outside
Courtesy of Jamie Johnson

For anybody struggling with mental health, let this be your sign to find the help you need. Nobody likes looking back on their life struggles and wondering ‘what if?’ Hindsight may be an interesting thing, but you have the power within yourself right now to make your present life something you smile about down the road.”

This story was submitted to Love What Matters by Jamie Johnson from Lake Stevens, WA. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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