Growing Deeper Roots: My Story of Invisible Illness

Sometimes, the hardest part about being sick the way that I am is that on most days, I don't look sick. I suffer from an invisible illness. Those who I haven't told, don't know that I'm sick and those who do know, rarely understand the severity.  In my last few months, I have felt misunderstood, doubted, and judged because I can't do what a healthy person can...and yet, I look healthy. Managing my invisible illness, neurocardiogenic syncope (whether from a virus producing POTS or from my pituitary macroadenoma) would be significantly easier, if people understood it. Unfortunately, I have rarely met anyone who has any familiarity with dysautonomia.  Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls "automatic" functions of the body like heart rate, blood pressure, digestion, pupil dilation and constriction, kidney func...

I guess I spoke too soon. It seems like every time I have a victory, my body reminds me that I'm sick. Last week was lovely. I was feeling strong and able-bodied. I fainted Friday but I got back up and had a nice weekend with my family and friends.  Sunday evening, I could feel my body starting to tire. With thesis deadlines, the show coming up, and the excitement of feeling even just a little bit more normal, I ignored my fatigue.  Monday was an exciting day for me. One of my favorite political journalists was visiting my campus and my Media and Politics professor, who is also my thesis advisor, was hosting a dinner for him. Being the blessing of a professor that she is, she sat me next to him and I got to pick his brain for a three course meal. As I sat there talking to him about Trump-fever and Jeb Bush's pathetic campaign, I could feel my mind beginning to fog.  I got through the dinner and his talk that followed, but most of his talk was blurred in my mind. I couldn'...

I don't know if I ever really understood "living for the weekends" more than I do this summer. Last summer I worked at an all day summer camp. It was exhausting and sometimes frustrating but I really liked it. I felt like I was getting a lot of fun exercise and vitamin D. Then, I had money to spend during the weekend. I could drive to my boyfriend's house and visit him and I got to spend free time with my friends. I was starting to experience the fatigue, muscle pain and GI symptoms that have since wrecked havoc on my body, but I was still functional. I was still independent. During the school year, I had a busy stressful schedule, but I loved every minute of it. I love learning and I loved all my jobs at school. Weekends were fun, but so were weekdays. I had control of my life.  That's not what this summer is like. This summer, I spend every day researching self prescribed physical therapy, crafting an anti-inflammatory diet, and trying to work towards a more ...

The other day, I fainted in PT. I had had a really good session, making it up to 80 degrees on the tilt table and tolerated it for 13 minutes. However, while trying to sit up after the session, I fainted, giving one of the med students on my case, the OT, the PT, and my mom and sister a good scare.  While I was trying to recollect myself, the group discussed how they could tell I was about to faint. My mom said her classic line, "I can see it in her eyes. They lose their sparkle." My OT said she could see it in my breathing. My PT said he saw it in my heart rate. But they all agreed that my eyes go a little duller right before I pass out. They even compared me to the Genie in Aladdin.  Our discussion about my fainting eyes got me thinking. I've learned a lot during this process and one of the biggest things I've noticed is how people respond to this tumultuous journey. You can always see it in their eyes.  When I bring up Lyme to the cardiologists, their e...

Thanks to a friend of my mom's (Thank you, Kathy!), I have found a wheelchair. Apparently there is this really cool organization, Federated Charities' Medical Equipment Loan Closet, that loans medical supplies/equipment such as wheelchairs, crutches, etc. for 60 days at no cost to the patient. It was really easy and accessible and it was available the day after we called. So I wanted to give a shout out to awesome charities like this that help out people in need in ways that often don't occur to us on a regular basis.  We all know about shelters and kitchens that help out the less fortunate but places like this aren't always advertised or well known. While I'm lucky enough to have two hard working and able bodied parents that do a wonderful job providing for me, I know how burdensome medical expenses can be and they add up. Even with insurances partially covering the cost of wheelchairs and crutches, fees and co-payments put more burden on those who struggle to m...

I've heard this is true for many chronic illnesses and I've seen it to be true for myself: there are good days, there are okay days, and there are bad days.  When people ask me how I'm doing I usually respond with "I'm alright," or "I'm okay today." But when I have the bad days, the dog days, the rough days, it's hard to lie. This is when I usually say something vague like "Oh you know, there are good days and bad days."  Unfortunately, I can't control when those days come. If I could plan them, I would choose days when I have no plans and it's raining, or days when I can just lay in bed. I wouldn't pick the days when I have family visiting, or I want to go out and see friends, or when I have plans to actually have a life.  Today was a dog day. Today was a 4 faints in 4 hours day. Today was a vertigo day. Today was a nauseous day. Today was a leg spasm day. Today was a brain fog day.  But today was also Father...