Living an invisible life

Living with an invisible illness is one of the hardest things to go through on a daily basis. I’ve faced people who have simply dismissed my symptoms, doctors who gave me the wrong diagnosis over and over again, and some people who simply say I fake the entire thing for attention. I have Neurocardiogenic Syncope.

NCS is a disorder where I can lose consciousness because my blood pressure drops along with my heart rate. While it’s more commonly known for the fainting it causes, the disorder comes with a whole delightful package of other symptoms that can cause discomfort and chaos in my life, including constant tiredness, nausea, headaches, digestive issues and more. Due to these issues, I have to constantly be aware that I’m drinking enough water and using sufficient salt on my food to maintain high blood pressure.

Most of the time I can navigate life without the fear of fainting. Usually when I feel suddenly weaker or flushed, I know my body isn’t going to cooperate with me today and it’s on its way to becoming ice cold. However, last semester I was ambushed by an episode on my way to class.

I guess I hadn’t realized how invisible I had become, because of the disease, until I experienced a frightening and surprising event last semester. It was this moment that I had realized how scary and dangerous my syncope could be. I had woken up late that morning and was feeling like my usual self. I had been a little stressed and was hurrying, but I hadn’t noticed any physical signs that I was going to end up fainting on my way to class.

I was rushing past the Performing Arts center after crossing the bridge near A-House heading toward Bowman-Oddy when suddenly everything went black and I couldn’t move. It’s a strange sensation when you are unconscious; you feel like you can tell where you are and how horrifically awful you feel, but you can’t move or speak. I knew I was laying face down on the asphalt of the dead-end street near Bowman-Oddy. I was aware of the people who had gathered around me, but even though I could hear their voices, it sounded muffled, almost as if I was underwater.

I’m not sure how long I was unconscious, but I know it felt like an eternity. When I finally opened my eyes, I saw that people were walking around and past me to reach the sidewalk; none of them checked to see if I was okay or even alive. In the entire span of time I lay unconscious, many students had passed; however, not one stopped to offer help, call the police, or even ask if I was OK. A more terrifying fact than being ignored while lying unconscious on the sidewalk, was that when I opened my eyes, I realized my head was an inch away from the curb. If I had I hit my head on that curb and no one stopped to check on me, I could have died or been seriously seriously injured.

Looking back, I always wonder what those students who ignored my unconscious body were thinking. What was it about my unconscious body — sprawled dangerously across the path, with my head almost reaching oncoming traffic — made them think that I was OK? Had they simply not seen an unconscious college student lying in the middle of the road, or did they think I had laid down for a mid-morning nap? Questions like this are a reality to not only me, but to many University of Toledo students who face NCS as well.

We are not always educated about what to do when you encounter a situation like this. This is especially true for rare diseases like NCS. However, I can tell you certain things you can do, or at least things I would’ve wanted someone to do if they’d bothered to help me. First, make sure they’re on their back. Then lift their legs 12 inches above their heart to increase blood flow to the brain. These bring me back to normal in seconds if I become unconscious. One last thing, call someone such as the police or notify a school official, who will know how to get the person to an emergency room or the appropriate medical care.

Should you come across someone who looks out of place lying dangerously unresponsive in an unusual place and seems to be in an awkward position — please stop. Even if you are late to class and it’s exam day, at least stop and check if the person’s OK; it could be the difference between life and death for them. Trust me; if you help me when I’m in this situation, I will be grateful. I felt invisible that day on the pavement. Please do the right thing and don’t make a person feel as though their invisible illness erases them as a human as well.