Most people don’t need pacemakers until retirement age. I must have had one when I was 26.
In my mid-twenties, I felt abnormally tired and anxious. I found myself falling asleep on the work bus every day, and sometimes I felt a strange fluttering sensation in my chest and needed to take slow, deep breaths to calm myself down.
Since I was young and healthy, I figured it was probably just a hormonal imbalance, or maybe a vitamin deficiency. My doctor initially agreed, but after noticing that I had an “unusual heart rhythm,” he added heart health to the list of potential culprits and told me I needed an echocardiogram.
It was enough to send panic racing through me. My father had lived with several heart conditions since birth and had spent much of his childhood in and out of the hospital for operations. After I was born, his condition worsened, forcing him to retire early. He couldn’t exercise and had to manage his daily activities so he wouldn’t become too exhausted. He defied medical predictions of his lifespan on several occasions, but I was only 14 when we finally lost him to heart disease.
Much of my father’s life was defined by his heart disease, and much of my adolescence was defined by his death. The idea that I was now awaiting my own cardiac diagnosis seemed too much to bear.
Thanks to him, I was examined at birth for heart problems and received a certificate of good health. But now, at 26, my echocardiogram results were concerning enough that my doctor called my local cardiology department, who insisted that I be admitted immediately. After being rushed to the ER, I spent five days in the hospital, seeing more specialists than I could remember, and wearing a 24-hour heart monitor.
I was eventually diagnosed with a rare heart condition called congenital complete heart block, which is often asymptomatic well into adulthood. Complete congenital heart block affects 1 in 15,000 to 20,000 people and occurs when the heart’s natural pacemakers malfunction, causing a slow, irregular heartbeat. This explained the “anxiety” I thought I was feeling – it was actually palpitations due to my irregular heartbeat. The biggest risk was that my heart would stop pumping enough oxygen around my body, causing me to pass out or even go into cardiac arrest.
The medical solution to heart block is a pacemaker. At 26, I was about to be fitted with a device that most people only get at retirement age.
My dad had a pacemaker. Almost 20 years ago, they were bigger than they are today and his was sticking out from under his skin. The limitations of having a pacemaker are quite specific. These include not placing magnets or electrical devices (such as a cell phone) near the device, not standing too long outside the doors of stores equipped with anti-theft systems, and avoiding contact sports. I was told to stay away from the rowing machine in the gym in case the movement hits the machine against my collarbone and damages it.
Oddly, I was also warned against soldering. Apparently, the electromagnetic energy created by a welding machine can wreak havoc on pacemakers.
None of the limitations the doctors told me about would have a significant impact on my daily life. But the emotional impact of knowing that my heart was going to be attached to a drum set for the rest of my life was hard to accept.
“Much of my father’s life was defined by his heart disease, and much of my adolescence was defined by his death. The thought that I was now awaiting my own heart diagnosis seemed too much to bear. .
Pacemakers have to be replaced every 10 years, which meant I faced a lifetime of operations and regular check-ups to monitor my condition. I was about to become dependent on a battery to run the most important organ in my body. I would be a heart patient for the rest of my life.
Immediately after my diagnosis, I couldn’t imagine going 30 minutes without thinking about my heart condition. when I haven’t had debilitating panic attacks; when my future seemed bigger than my next doctor’s appointment.
In the days and months that followed, I felt more alone than I had ever felt in my life. I had gone from being an active, outgoing 20-something who worked, volunteered, and ran to someone who struggled to get through the day.
As the fatigue and heart palpitations due to my heart condition continued, the emotional impact was worse. I developed panic attacks, which left me dizzy, disoriented, and terrified of being in crowds or places where I couldn’t sit. They caused my heart to race, which made me panic more as I was worried that my heart condition was getting worse.
I was afraid to exercise in case my heart couldn’t handle it. My social circle shrank when I gave up my usual social activities, and many people just didn’t know what to say to me. When I mentioned buying a pacemaker, many found it hard to believe that someone under 30 would need one.
I am very grateful to all the family and friends who supported me during this time. But the loneliness I felt came not from a lack of human contact, but rather from a lack of connection with people who could relate to what I was going through. The only person in my life who could appreciate the reality of life on a cardiology ward died when I was a teenager. Also, everything I was going through resurfaced the unresolved grief of my father’s death.
I felt conceited and ungrateful when I worried about the appearance of the pacemaker in my chest and the visibility of my scar. I was worried that I wouldn’t want to wear bikinis or strappy dresses anymore. While dating was the last thing on my mind at the time, I couldn’t help but wonder if men would be put off by their looks or, in my most vulnerable moments, by the fact that I had heart disease. .
Above all, it was as if no one could understand how fragile life suddenly was. My heart palpitations were a chilling minute-by-minute reminder that the most powerful organ in my body was malfunctioning.
In the midst of this isolation and desperation, I did what most millennials do: I turned to the internet. I didn’t google more information about my condition; what i needed was the connection. So, on a whim, I typed #pacemaker on Instagram.
Suddenly, my screen was filled with real people who looked like me, who were my age, with a scar on the upper left of their chests in common. Some of them were marathon runners, hikers, weight lifters. I have seen women and men in their teens, 20s, 30s and 40s who were dealing with heart problems and also getting married, going on trips abroad, having babies and laughing with their friends.
Digging deeper into hashtags, I started finding people with my specific condition. I found other women in their twenties with heart block and started contacting them. They gave me honest answers about what recovery really looks like and advice on how to navigate the six weeks post surgery when I wouldn’t be allowed to raise my arm above my head.
They were the people I could ask, “How long did it take you to put on a bra after you had your pacemaker installed?” and “Were you worried about having your period just before the operation?”
They validated my fears and encouraged me when my surgery date finally arrived. Then they celebrated my recovery milestones and my eventual return to normal life.
Many of our conversations took place through a few comments on a hashtagged post, or a few sporadic DMs. And while those on-and-off conversations could never have replaced my actual support network, they offered me something that no one in my physical reality could. These women understood me in a way that only someone who lives the same reality can understand. Finding these connections was like finding water in the middle of the desert.
After my pacemaker surgery, I shared a photo on my Instagram with a caption that read, “I AM A ROBOT! I had taken it about an hour after coming out of the operating room, while still in my hospital gown with heart monitors strapped to me.
It was empowering to share it with the world. I was joining the #pacemakerclub online and adding my own face to the group of people who had given me hope. I continued to share photos every two weeks as my scar healed and I settled back into everyday life. After fearing for so long that my heart condition would define me, proudly posting photos of my recovery made me feel like I had reclaimed the story of my own life.
It’s been four years since my pacemaker surgery, and every once in a while someone “likes” one of my old #pacemaker Instagram posts. Every time I get this notification, I know that person, or someone they love, is groping in the dark for a hand to hold, just like I once was. I responded to every DM I received from a stranger asking for advice or sharing their fears.
These days, I’m one of those people who used to amaze me through the small squares. My heart palpitations and other symptoms were resolved with surgery. I run, walk and swim, and rarely have panic attacks. To my surprise, I never hesitated to show my scar. I have a pacemaker, but I don’t really think about it very often.
The realization of the fragility of life has stayed with me ever since, but in a way that has added sweetness to my days, reminded me to savor sunsets and laugh freely and often. And while I can be as critical as anyone about the impact of social media on our society, I’ll never forget how much it helped me when I needed it most.
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