Cardiac Arrest ❤️ Archives

Invisible Illness: How I Look Doesn’t Reflect How I Feel

by John Centofanti | Mar 26, 2026 | Brain Injury, Cardiac Arrest ❤️, Neurological 🧠

I realize this might sound ridiculous. When people ask about my health, or a certain health condition, their response is often something like, “But you look great, it can’t be that bad!” As if looking good equates to good health or even feeling good. Instead of feeling complimented, it feels discouraging.

There are so many people with serious health conditions that suffer from what doctors call invisible illness. Invisible does not mean a patient is fabricating a health issue. It means that the condition is not observable by others. This makes sense. It’s logical. Yet, most people falsely believe if they can’t see a clear indication of illness, then whoever they are looking at must be healthy. This is very common with neurological disorders.

People understand this at some level, but it doesn’t seem to matter when speaking to someone with chronic illness. One of my neurological disorders, syndrome actually, is an invisible illness. It’s Postural Orthostatic Tachycardia Syndrome, or POTS. Cleveland Clinic explains that “Postural orthostatic tachycardia syndrome (POTS) is a condition that causes numerous symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue.”

Why can’t you see POTS? Because you can’t see my heart rate, you can’t observe my degree of dizziness, and you can’t understand my fatigue if I’m standing in front of you. In the same way, you can’t see in someone else high blood pressure, poor vision, a stomach ulcer or a pancreas that’s not doing its job well. There are so many illnesses and conditions that you can’t see.

I’m astounded when people respond to me that I look fine, therefore, I must feel fine.

My neurologist warned me to expect comments like that. He creates YouTube videos and Instagram posts to help patients and their connections understand invisible illness. I’m grateful for that.

I have two cardiologists, and they want me to do cardio exercise. So I do that three times a week. My two neurologists want me to do some form of resistance training, like weights. I do that three times a week. If I only went to the gym when I felt like it, I would never go. Just getting there and starting feels like what I imagine walking in quicksand is like. My doctors say resistance training improves brain performance and neuromuscular disorders. I need all the help I can get. A side benefit is that I suppose I look like I’m in good shape.

One of the reasons I’m writing this is to educate people. I realized long ago that hardly anyone can truly understand what I’ve gone through or what I deal with. I’ve had the blessing of meeting other cardiac arrest survivors. They understand. Even then, each of us have a different mix of conditions. It's like a tornado that rips through a community. Some people's homes are destroyed, while others only have debris in their yard.

I’ve explained to many people how anoxic brain injury has caused me to have cognitive impairment. Almost always, people will say something like, “Oh, I totally understand. I forgot my neighbor’s name yesterday!”

Most people realize you can’t compare forgetting your neighbor’s name with brain damage. The comparison may be said to empathize. It does the opposite. I feel unheard.

You may be overloaded, stressed out, tired or just a little forgetful because you are aging. That’s common. A brain injury is not. I’m sure many people say these things so they can sound relatable. Or, maybe they don’t want me to feel so bad about my condition.

Several years ago, I had emergency gall bladder surgery. It was the most painful thing I’ve ever experienced, and I’ve endured many painful experiences. An older female relative later told me she had the same emergency surgery, and she understood the severity of the pain. She said it was so terrible, it made giving birth seem easy. In fact, she said she’d give birth any day over gall bladder surgery. It was that bad.

Plenty of women I know have shared how giving birth was such a painful experience. Based on my relative’s story, wouldn’t it be downright foolish and rude to tell a woman, “I know exactly how you feel about giving birth. I had my gall bladder removed?”

You can’t relate to surviving cardiac arrest nor the repercussion that came with it. I don’t expect you to understand. I can’t relate to women who gave birth, but I can show some compassion and be helpful however I can. Most people don’t want pity. I definitely don’t.

If someone you know has an invisible illness, and they describe a terrible symptom, resist the urge to compare it to your experience. Sometimes, just listening is enough.

If you live with an invisible illness, I probably can’t understand everything you’re going through. Just know you’re not alone.

The Relief and Grief of a Medical Diagnosis

by John Centofanti | Mar 26, 2026 | Brain Injury, Cardiac Arrest ❤️, Doctor Visits, Healthcare, Medical Tests, Neurological 🧠

After two years of frustrating symptoms, I finally had an answer. That answer came with conflicting emotions battling in my mind. Any given day had a different winner.

A short time following cardiac arrest, I started to experience symptoms that became more frequent, and more defined. What I mean is that I didn’t just have a general sense of not feeling well. I felt dizziness every day that, at times, the severity had me reaching for the nearest wall or chair for balance.

My level of fatigue was—and still is—severe. Since it was only a few months after cardiac arrest, my cardiologist assured me this wasn’t uncommon. No matter what I said or how I explained the severity of my symptoms, his answer was always the same: “Cardiac arrest is traumatic. Not just emotionally, but to your entire body. It will take time for your body to recover.”

To be fair, a specialized cardiologist is concerned with your heart and all things related. It doesn’t mean he or she isn’t concerned with your other conditions. It would be unethical and bad medicine for a cardiologist to attempt a neurological diagnosis. More commonly, a cardiologist may share his opinion but would refer you to a neurologist. Plus, I’ve learned that symptoms like fatigue and dizziness can be caused from dozens, maybe hundreds, of factors.

More than a year later, there was no improvement or recovery in sight. Dizziness is a well-documented symptom post-cardiac arrest. I didn’t know that back then. It’s caused from anoxia—complete lack of oxygen to the brain—or hypoxia, which is not enough oxygen to the brain. However, my mix of symptoms went undiagnosed for close to two years.

Two Long Years

Two years later, I finally had an answer, but that answer meant I had another medical condition. There is both relief and grief when you get a medical diagnosis.

I don’t read much news for many reasons. One of them is that I need to choose where I put my mental energy, and news is too draining. However, one day I was skimming news and saw a headline that read: You look fine. Your doctor is stumped. But this disorder is leaving millions 'a hot mess.’

I had been frustrated with symptoms and had no improvement for nearly two years. My symptoms precisely matched what the article discussed. If I ever felt validated, it was then. One of the neurologists quoted in the article eventually became my neurologist, and for that, I’m deeply grateful.

After several tests, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). Cleveland Clinic explains that “POTS… causes numerous symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue.”

Two years later, I finally had an answer, but that answer meant I had another medical condition. There is both relief and grief when you get a medical diagnosis. I felt relief because there was an explanation for my symptoms, and I could learn to manage them—and maybe feel better. I felt grief because that meant having yet another medical condition to manage that will likely never go away. That impacts my quality of life. Like many neurological disorders, there isn’t necessarily a cure, but there are ways to manage symptoms. The conflicting emotions can feel like a massive battle in your mind: validated, disappointed, relieved, hopeful, frustrated, angry, hopeful again. That inner battle can feel exhausting, as if there is only one correct emotion.

There is no correct feeling, although some are healthier and more beneficial than others. I’ve learned that I had to work through—struggle through—that range of emotions. That process of struggle allowed me to come to a place where, after a diagnosis, I could feel thankful and hopeful. That doesn’t happen instantly.

Challenges like these feel like pushing a large rock up an icy hill. Every so often, it feels like a losing battle. No one in their right mind wants to be diagnosed with a medical condition. Yet, it feels relieving to get that diagnosis. It validates you. You’re not imagining symptoms. You’re not crazy.

I’m thankful for my doctor who put me on the right path, and educated me on how to manage my symptoms. If there is anything I’ve learned, it’s that good healthcare isn’t only based on having a good doctor. Part of good healthcare depends on you, the patient. Good doctors are key, but it’s up to you to ask questions, communicate honestly with your doctor, and do the work they tell you to do. Equally important is having the attitude where you do not give up.

Managing symptoms is my responsibility. To reduce POTS symptoms, I’m on a high sodium diet. I sometimes wear compression socks. I need to stand up slowly if I’ve been sitting for a while until I feel steady.

Annoying? Yes. Empowering? Also yes.

The average time it takes to get an accurate diagnosis of POTS is seven years. I’m thankful my time was about two years. Whatever you’re facing, don’t give up, and do what you can to move forward, even if you take small steps as you have the energy.

It can feel like the answer is out there somewhere, far from you. You might find that part of the answer is within you: your drive to overcome.

Dozens of Doctors and Nurses Repeated this Secret Advice to Me—Word for Word

by John Centofanti | Mar 25, 2026 | Cardiac Arrest ❤️, Health Insurance, Healthcare, Medical Tests

I survived cardiac arrest in January 2018. Full disclosure: I survived a health insurance denial in January 2018.

I’ve previously shared how I had cardiac arrest after my usual run on a warm day in January. I wasn’t breathing for 11 minutes, and that’s just the first time around. I’ve been asked about my lifestyle numerous times by doctors and nurses.

Did I smoke? Never.

Take drugs? Never.

Have high blood pressure? No.

Drink alcohol? No.

Eat healthy? Yes.

Exercise? Yes, I’m a runner.

They said it’s shocking that I had cardiac arrest.

What led up to that day is equally shocking. What happened after is beyond words.

Across America, more people have become aware of how health insurance companies routinely deny coverage for their policyholders. These aren’t rare instances, it’s part of their system to put profit over patients.

Important note: policyholders are also patients.
So health insurance companies are denying—sometimes lifesaving—care to patients.
On top of fighting sickness and disease, patients have to battle their health insurance companies. These are the companies that claim to be your partner in health.

Here’s the advice

“I don’t believe in lying, but the healthcare system is corrupt. The next time you have a concern about your heart, don’t wait for an authorization from your health insurance company. You will die waiting.

Instead, when you have a free day, go to the best Emergency Department near you. Walk in and say, ‘I’ve had pressure in my chest for two weeks, and it’s severe. Now, that pain is radiating in my jaw and down my left arm.’

You will get the medical attention you need and deserve.”

If this didn’t happen to me, I wouldn’t believe it. One of my doctors ordered a test. To be clear, this was after I survived cardiac arrest. I already had over three years of documented medical conditions, such as anoxic brain injury, cognitive impairment, movement disorders, communication disorders and other neurological disorders. My health insurance company paid for most of these claims after a fight, so it was aware of the magnitude of my health conditions.

After my doctor ordered the test, I received a denial letter from my health insurance company. The denial letter started with, “…because you do not have any serious health conditions…” Really? I called a rep assigned to me at the health insurance company. To say I was angry is an understatement. I asked if cardiac arrest didn’t qualify as a “serious health condition,” what did, decapitation?

Doctors and nurses in different hospital systems and practices gave me the same advice. Each person was sure to share it when no other people were in the room—just me and the provider.

Here’s the advice: “I don’t believe in lying, but the healthcare system is corrupt. The next time you have a concern about your heart, don’t wait for an authorization from your health insurance company. You will die waiting. Instead, when you have a free day, go to the best Emergency Department near you. Walk in and say, ‘I’ve had pressure in my chest for two weeks, and it’s severe. Now, that pain is radiating in my jaw and down my left arm.’ You will get the medical attention you need and deserve.”

Is that what it takes to get medical care?

It’s conservative to say I’ve heard that advice dozens and dozens of times with little variation.

I know how health insurance companies operate. You know it. Doctors know it. Doctors have their workloads multiplied because they have to justify every test they order and every pill they prescribe. Patients are the ones who suffer delayed healthcare, which results in poor healthcare, because of it.

I was taken by ambulance to the emergency department cath lab (cardiac catheterization laboratory) the day I had cardiac arrest. So I appreciate people going to urgent care for a sprained ankle rather than clogging up the emergency department. Every second counts when your heart just stopped. Yet, our current healthcare system leaves many people with little choice but to go to the emergency department and do their best acting job when they need care.

To be transparent, I had to work through quite a bit of anger in my health journey. Anger isn’t healthy, and it doesn’t help anyone. Anger alone doesn’t bring change.

If you have a serious health concern, my suggestion is to do whatever you need to do so you can live. I also suggest you fight back. It is not impossible to win against your health insurance company. That’s what they want you to believe. Your health insurance company is hoping to wear you out. Don’t let that happen. Your life may depend on it.

Health Issues aren’t My Identity. They are My Reality.

by John Centofanti | Mar 25, 2026 | Cardiac Arrest ❤️, Doctor Visits, Health Insurance, Medical Tests, Medications, Neurological 🧠

It can be challenging to live what people consider a normal life when you get reminders every day, throughout the day, that you live with numerous health conditions.

We all know that person—the one you avoid asking, “How are you?” You don’t ask because you know their response will be much more than you wanted. Did you want the details of their latest blood work? Or hear about their recent knee injury? Want to listen to their frustration over sitting for hours in waiting rooms? Did you know they were prescribed yet another medication?

No one wants to be around that person. For emotionally healthy people, no one wants to be that person either. After cardiac arrest, I found out first hand how easy it is to become that person.

As someone who has seen over 45 doctors and medical providers in just over eight years, I can say from experience—it’s hard to escape.

I read an insightful article in Psychology Today, 4 Illness Identity States and How to Work With Them, by Katie Willard Virant MSW, JD, LCSW. It shows how chronic illness can affect one’s identity and self perception. They are: Rejection, Engulfment, Acceptance, and Enrichment.

Ultimately, enrichment is the ideal identity state to have. You’ve seen war veterans or professional athletes who have experienced a tragic accident. Many of them, after much hard work, use that illness to inspire others to greatness. None of us can imagine what it took for them to overcome the impossible, only to turn around and encourage others with less tragic lives, for the most part.

I’m thankful to have doctors who are passionate about their work, and deliver genuine care to me because of that. I shared that article with one of my doctors. He further explained that people with chronic illness have a primary illness identity state, but we also move from one to the other. That can be based on circumstances, changing health status, and even our mood.

I have numerous health conditions that have various symptoms, so I get reminded of them every day. As a fellow cardiac arrest survivor and friend put it, the moment you survived cardiac arrest was as if someone handed you luggage you didn’t ask for. You have to carry it around with you the rest of your life, every day, all day. No one can carry it for you, and you can’t skip a day.

Many of my doctors find it amazing that despite not breathing for 11 minutes, I can still drive and I can feed myself. Do I sometimes drop my fork? Frequently. Do I sometimes knock over my glass instead of picking it up? Too often. Do I stub my toes or crack my elbows from running into walls or furniture in my house? More times than I can count. Those are friendly reminders of my health.

Everyone stubs a toe occasionally, or bumps into furniture. I have balance and coordination issues, plus movement disorders and dizziness. Cracking my elbow through a doorway in my home hasn’t happened just a few times. It’s a matter of how frequently. I’ve gone for several rounds of neurological and occupational therapy, and it’s helped me to function better. I’m grateful for it.

Each doctor, therapist, or provider tells me up front they want to set expectations. That means therapy will almost definitely help me improve from my current state. It also means I must acknowledge that I will never be back to what I was before a brain injury. So each doctor and therapist are very hopeful, and also realistic.

Practically speaking, that means potentially I may spill things less often, trip less often, and remember to get a fork instead of a spoon to eat eggs at breakfast. That also means I still do those things. I can’t avoid them.

Managing chronic health conditions can feel like a part-time job. It’s not just the symptoms. Any given day might include: scheduling follow-up doctor appointments; rescheduling appointments that were cancelled by the doctor; ordering medications on schedule so I don’t run out; battling, when necessary, my health insurance company to pay for prescribed medications, tests and therapies ordered by specialists; doing therapy exercises at home consistently; and refilling medication pill boxes, trying not to be confused why a pill that was always rectangular and yellow is now white and round.

Do I want to talk about these issues with every acquaintance I see in public? No. People love and care about me, and I find that humbling. So people do ask me how I’m doing, and their concern is sincere. How do I answer that? I’m fine? I’m not. Today I spilled coffee on myself, and I hurt my knee again. Nobody wants to hear that, and I got tired of hearing myself say it.

Anyone living with neurological disorders or other chronic conditions would rather not dwell on those things. We wish to live life just like others do. In fact, not being able to live life just like others do is part of the frustration, discouragement, and struggle of carrying that luggage I didn’t ask for. I don’t wake up thinking about my symptoms. I just get reminded of them within the first 15 minutes of my day.

Has illness ever been my identity? I’d like to think not, but those around me could answer objectively. At the least, I’ve jumped in the water of illness engulfment—not for desire, pity or enjoyment, but because it’s challenging to escape.

Is illness my identity? No.
Is it my reality? Yes.

I’ve chosen to make a deliberate, frequent evaluation of my identity when it comes to chronic illness. That choice is because I felt engulfed too many times. These days, when someone asks how I’m doing, my response depends on the relationship. To some people, my response is, “I’m fine.” To others, I say, “It’s rough, but I’m taking steps forward. Thanks for asking.”