FAQ

What is an invisible illness?

A person who has an invisible illness does not outwardly appear to be sick. I look pretty normal: I like fashion, I wear make-up, I go to the grocery store, I drive a car. However, I don't go out of my way to talk to people, and I avoid eye contact so they don't talk to me. Why? Because brain fog makes it hard for me to think. If I'm inside a store, fluorescent lights make me feel dizzy and disoriented, and it takes a lot of effort to carry on a conversation. I worry that I'll suddenly feel nauseous or dizzy while talking with someone and have to make a quick exit or explain myself. Neither tends to yield good results.

What does it mean to be chronically ill?

For me, it meant years of being misdiagnosed and over-medicated. It meant losing friends and feeling like I was going crazy. It meant dropping out of a PhD program. It also meant, and continues to mean, being misunderstood by nearly everyone, including my doctors. It means being ignored and dismissed. It means being too tired to stand up for myself, or having too much brain fog to think things through clearly. It means settling for less and not being in full control of life decisions. It means losing jobs. It means enduring a seemingly never-ending succession of medications (and accompanying side effects) to find out what will "work." It means having a disease become part of your identity. It means not being able to plan because you don't know how sick you will be from day to day. It means being handed a life sentence no one deserves.

It also means that I have had to become my own advocate. It means that, while I continue to take medication, I am also taking charge of my health in ways I can--through exercise and diet. I'm not seeking a cure, but I am trying to find the best method to optimize my health and my life.

What is POTS? What is NCS?

POTS stands for Postural Orthostatic Tachycardia Syndrome. It presents in a variety of ways, but one of the main ways that is true for every patient is that the heart rate skyrockets upon standing. I have a subtype of POTS called hypovolemic, which means that I have about 80% of the amount of blood that a normal person has. Symptoms that I personally deal with also include low blood pressure, fainting, daily dizziness, daily fatigue, severe brain fog, shortness of breath, sudden nausea, a seizure or two, palpitations, drenching night sweats, low body temperature... the list goes on. I cannot have caffeine, processed foods, or nitrites or nitrates. I have to eat a high-salt diet. Fluorescent lights wreak havoc on my autonomic nervous system and can mean a night of adrenaline surges and tremors.

NCS stands for neurocardiogenic syncope, which for me is coupled with an irregular heart beat. This means I have blood pooling issues, and I lose my vision every time I stand up. I also faint and often feel light-headed.