Growing Deeper Roots: My Story of Invisible Illness

Last night, our Peer Mentor boss took the team to an outdoor school called Echo Hill. We went to this out door school in August to partake in some team building exercises. This time we went at about 6 pm and got to watch the sun setting on the Chesapeake. We played some games and went on a night hike, ending the evening on the beach cooking s'mores. It had every ingredient for a lovely fall night.  But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.  When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anythi...

It has been a beautiful week here in Chestertown! We have had gorgeous Fall weather all week and I'm loving it. But, when I said that I love Fall, I didn't mean that I like to fall. But I did. And I hurt myself. Wednesday night I had a bit of an issue. I got out of bed to go to the bathroom and I fainted/tripped and fell hard to the ground. My foot rolled and made a loud popping noise (according to my roommate, who was awaken by this noise and my fall). Then, it quickly swelled to look something like this: I'm no doctor, but I'm pretty sure that that bump isn't suppose to be there. Just a hunch.  So I iced it and went to the Health Center on campus in the morning. I don't remember how much I have talked about the Health Center at WAC but there are great! I usually see PA Beverly Clarke and she knows my whole situation as well as I do. She is a God-send and has made this whole process much easier. Anyway, she sent me to the hospital for X-Rays. At ...

As I mentioned a while back, I was in a senior thesis production this semester. It was a two character play called Running by Arlene Hutton. I took on the role because I needed to have a creative outlet while pushing through my last year at WAC. It was a tolling process and there were many times, like two weeks ago when I could barely stand without fainting, when I thought that I had made a horrible mistake when I committed to the show. I was terrified of fainting on stage or falling into a brain fog period while performing. I took a major gamble.  The crew worked to develop a plan for every possible situation that could arise. I had an understudy ready to take my place in the worst case scenario and the ushers and house managers were alerted to the possibility of a potential episode. I had a heart monitor on the whole time and the stage manager monitored my heart throughout the performance, with a threshold in mind for an indiction that I was symptomatic. We even had a "fainti...

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...

One of the biggest hurdles for people with dysautonomia is the lack of research, funding, and awareness about the spectrum of disorders. Although this invisible illness affects millions of people worldwide and targets people of all ages, races, and genders, very few people, including medical professionals, know much about the it.  To help combat this major issue, Dysautonomia International is hosting a Tweet-A-Thon today to spread awareness.  Check out their  website  for more information about the outreach movement!  Here are some of the trending tweets!  I also tweeted this image because it is a very concise and accurate graphic about my specific form of dysautonomia. I hope you are all inspired to Tweet about Dysautonomia to help spread awareness and work towards more research and better treatment!

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'...