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 heath 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 a number of 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 even if I’m standing in front of you. In the same way, you can’t see 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. I do that three times a week. I have two neurologists, and they 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 it improves brain performance. 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 them have a different mix of conditions than I do.

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 had 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 sure don’t.

If someone you know has an invisible illness, and they describe a terrible symptom, resist the urge to compare it to your own 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.

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 heath 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 a number of 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 even if I’m standing in front of you. In the same way, you can’t see 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. I do that three times a week. I have two neurologists, and they 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 it improves brain performance. 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 them have a different mix of conditions than I do.

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 had 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 sure don’t.

If someone you know has an invisible illness, and they describe a terrible symptom, resist the urge to compare it to your own 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.