Struggling to Get a Diagnosis
Lyme disease and the chronic illnesses that were caused by it have completely changed my life. I went from riding motorbikes through the Kenyan jungle while working for an NGO, to being unable to get out of bed. I went from getting accepted to Yale for graduate school to struggling to speak and being unable to read and write. Over the years I told seven different doctors that I thought I had Lyme disease and they all told me I didn’t because my ELISA test came back negative. I didn’t know this at the time but this blood test is highly inaccurate. My illness started when I began experiencing extreme fatigue and joint pain. Then I started having seizures. They asked if I was depressed and insinuated all of my symptoms were in my head. I continued to rapidly deteriorate. I had trouble breathing, I would black out and collapse when I stood up. I became completely bedridden. My memory faded. I couldn’t remember what happened the previous day. Several times, I felt like I was dying while simultaneously being told by doctors there was nothing wrong with me. Every day I thought this can’t get any worse, and it did. I hope that by sharing my story with others I can prevent someone else from having to go so long without being diagnosed and bring awareness to this disease that has been silenced for so long.
Then Came the Chronic Illnesses
My Lyme Disease went undiagnosed so long that the bacteria was able to infiltrate every part of my body and cause other illnesses. I was diagnosed with dysautonomia, an autonomic nervous system disorder. This caused a condition called Postural Orthostatic Tachycardia Syndrome which causes my HR to spike sometimes up to 250 bpm and my bloodpressure to plummet. This leads to fainting, extreme fatigue and a number of other issues. I was also diagnosed with Gastroparesis, which is a parital paralyzed stomach. This means I cannot eat and have to be fed through a feeding tube. I am in the process of being evaluated for other conditins as well.
While at first I was so hard to have my life altered so significantly, I have turned something negative into a positive. I decided that I wanted to use my journey with Lyme Disease and chronic illness to spread awareness about my illnesses and hopefully help others who have yet to be diagnosed get diagnosed sooner. A lot of my conditions can be considered "invisible illnesses" (on the outside you can seem fine). I wanted to change the stigma behind invisible illness and share what it is like to live everyday with these conditions. I started an instagram acount and a youtube vlog. I show the ups and downs of chronic illness. I like to demonstrate that you can still find joy in live and find adaptations to your hobbies you use to love and I also show that its ok to have a hard day and feel sad about it.