Author’s post-operation photo.
In my mid-20s, I was feeling exceptionally tired and anxious. I would find myself starting to fall asleep on the bus home from work every day, and sometimes I would feel a strange fluttering sensation in my chest and need to take slow, deep breaths to calm myself down.
Since I was young and previously healthy, I figured it was probably just a hormone imbalance or maybe a vitamin deficiency. My doctor initially agreed, but after noticing that I had an “unusual heart rate,” he added heart health to the list of possible culprits and told me I needed an echocardiogram.
That was enough to send panic through me. My father lived with multiple heart conditions from birth and spent much of his childhood in and out of the hospital for operations. After I was born, his condition worsened, forcing him to take early retirement from work. He couldn’t exercise and had to manage his daily activities so he wouldn’t get too worn out. He has defied medical predictions about his life expectancy many times, but I was only 14 when we finally lost him to heart disease.
Much of my father’s life was defined by his heart condition, 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.
Because of him, I was screened at birth for heart problems and given a clean bill of health. But now, at age 26, my echocardiogram results were worrying enough that my doctor called the local cardiology department, who insisted that I be admitted immediately. After a quick run through the emergency room, I spent five days in the hospital, meeting 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 usually asymptomatic until well into adulthood. Congenital complete heart block affects 1 in 15,000 to 20,000 people and occurs when the heart’s natural pacemakers malfunction, leading to a slow, irregular heart rate. This explained the “anxiety” I thought I was feeling – it was actually palpitations from my erratic heart rate. The biggest risk was that my heart would stop pumping enough oxygen through 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 receive a device that most people don’t get until they reach retirement age.
My father had a pacemaker. Almost 20 years ago, they were bigger than they are today, and his protruded 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 lingering outside shop doors with anti-theft systems, and avoiding contact sports. I was told to stay away from the rowing machine at the gym in case the motion slammed the device against my collarbone and damaged it.
Weirdly, I was also warned about soldering. Apparently, the electromagnetic energy created by a soldering machine can wreak havoc on pacemakers.
None of the limitations the doctors told me about would have a significant impact on my day-to-day life. But it was hard to accept the emotional impact of knowing that my heart would be stuck on a battery pack for the rest of my life.
Much of my father’s life was defined by his heart condition, 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 need to be replaced every 10 years, which meant I faced a lifetime of operations and regular checks to monitor my condition. I was about to become dependent on a battery to keep the most important organ in my body working. I would be a heart patient for the rest of my life.
Right after my diagnosis, I couldn’t imagine 30 minutes going by without thinking about my heart condition; when I didn’t have debilitating panic attacks; when my future looked bigger than my next doctor’s appointment.
In the days and months that followed, I felt lonelier than I had ever felt in my life. I went from being an active, outgoing 20-something who worked, volunteered, and ran to someone who found it hard to get through the day.
While the fatigue and heart palpitations continued, the emotional impact was worse. I developed panic attacks, which made me dizzy, disoriented and afraid of being in crowds or places where I couldn’t sit down. They made my heart race, which made me even more panicky as I feared my heart condition was getting worse.
I was afraid to exercise in case my heart couldn’t take it. My social circle shrunk as I dropped out of my regular social activities, and many people just didn’t know what to say to me. When I mentioned getting a pacemaker, many struggled to believe that anyone under the age of 30 would need one.
I am very grateful to all the family and friends who have supported me during this time. But the loneliness I felt didn’t come from a lack of human contact, but from a lack of connection with people who might understand what I was going through. The only person in my life who could appreciate the reality of life on a cardiology ward had died when I was a teenager. Also, everything I was going through brought up the unresolved grief of my father’s death.
I felt vain and ungrateful as I worried about the appearance of the pacemaker in my chest and the visibility of my scar. I dreaded not wanting to wear bikinis or strapless dresses again. Though dating was the last thing on my mind at the time, I couldn’t help but wonder if men would be put off by the way I looked or, in my more vulnerable moments, by the fact that I had a heart condition. .
Most of all, it seemed like there was no one who could understand how fragile life seemed all of a sudden. My heart palpitations were a chilling minute-by-minute reminder of the fact that the most powerful organ in my body was malfunctioning.
In the midst of this isolation and despair, I did what most millennials do – I turned to the internet. I did not Google further information about my condition; what I needed was connection. So, on a whim, I typed #pacemaker on Instagram.
The author two weeks after the operation. “After worrying for so long that my heart condition would define me, proudly posting pictures of my recovery made me feel like I had reclaimed the narrative surrounding my own life,” she writes.
Suddenly my screen was full of real people who looked like me, who were my age, with a common scar in the upper left corner of their chest. Some of them were marathon runners, hikers, weight lifters. I saw women and men in their teens, 20s, 30s and 40s dealing with heart problems as well as getting married, traveling abroad, having children and laughing with friends.
As I dug deeper into the hashtags, I started to find people with my specific condition. I found other women in their 20s with heart block and started looking for them. They gave me honest answers about what recovery is really like and tips on how to navigate the six weeks after surgery when I wouldn’t be allowed to lift my arm above my head.
These were the people I could ask, “How long did it take you to put on a bra after you got the pacemaker?” and “Were you worried about menstruating before the operation?”
They validated my fears and cheered me on when my operation date finally arrived. Afterwards, they celebrated my recovery milestones and eventual return to normal life.
Many of our conversations took place through just a few comments on a hashtagged post or a few sporadic direct messages. And while these off-and-on conversations could never replace my real-life support network, they offered me something no one in my physical reality could. These women understood me in a way that only those who live the same reality can. Finding these connections was like finding water in the middle of the desert.
After my pacemaker operation, I shared a photo on my Instagram with a caption that read, “I AM ROBOT!” I had taken it about an hour after leaving the operating room, still in my hospital gown with heart monitors strapped to me.
It felt empowering to share that with the world. I was joining the #pacemakerclub online and adding my own face to the group of people who gave me hope. I continued to share photos every other week as my scar healed and I returned to everyday life. After worrying for so long that my heart condition would define me, proudly posting pictures of my recovery made me feel like I had reclaimed the narrative surrounding my own life.
It’s been four years since my pacemaker operation, and every now and then someone will “like” one of my old #pacemaker Insta posts. Whenever I get that notification, I know that person, or someone they love, is groping in the dark for a hand to hold, as I once did. I responded to every DM I received from a stranger asking for advice or sharing their fears.
Nowadays, I’m one of those people who once marveled at the squares. My heart palpitations and other symptoms were resolved by the surgery. I run, hike, and swim, and I rarely have panic attacks. To my pleasant surprise, I was never shy about showing off my scar. I have a pacemaker, but I don’t think about it that often.
The realization of how fragile life is has stayed with me ever since, but in a way that added sweetness to my days, it reminded me to savor the sunset and laugh freely and often. And while I can be as critical as anyone about social media’s impact on our society, I’ll never forget how much it helped me at a time when I needed it most.
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