An unexpected visitor showed up early. Adorned in black robes he brought with him a chilly gust of change. Death appeared uninvited knocking at my door. He didn’t come inside, but he visited for a while, lurking in my thoughts. I never thought at 18 I would have to worry about the longevity of my life. Dysautonomia snapped its fingers and I went from a high functioning athletic college student to laying in my bed most of the day. The occasional Trader Joe’s run with my mom and walks to the beach to check the waves I couldn’t surf quickly became the highlight of my day.
I never thought at 18 I would need a colonoscopy, or be the youngest person by 50 years in a cardiologist’s office, or be asked why I have electrodes and wires all over my body at the beach, or not be able and still not be able to go to the bathroom on my own (you don’t realize how lucky you are to have regular bowel movements until you can’t have any at all, so don’t be grossed out and appreciate your body). I never thought I would wake up in the morning, walk into my bathroom, and wake up in the bathtub after losing consciousness. And I never thought I would accept fainting as a regular occurrence. Unpredictable dizziness, shaking, vertigo, relentless nausea that has not subsided in months even with medication. Ceaseless stomach pain, throwing up, constant bloating, eating a 90% liquid diet. It's like having the flu and food poisoning all the time. Having a nurse take my pulse at the end of an appointment, run out of the room, run back in with my doctor, and then have my doctor tell me I immediately need to be hospitalized because she’s worried I might die. Only to get a call the next day that no hospital can admit me because I’m too old for Childrens and too young for the big kid hospital because I “have normal bloodwork.” The only thing worse than being hospitalized is not being hospitalized when you need to be. Waking up in the middle of the night not being able to breath, going to the ER to be told you look fine, your bloodwork is fine, and your blood pressure is great, go home. All on my dad’s birthday while he’s worried I might not make it through the night. When the people who are suppose to know what’s going on and help you can’t figure out what’s going on and don’t help you it can be a helpless and terrifying feeling.
At 18 I wasn’t prepared to be diagnosed with an incurable and invisible illness. I was both relieved and stunned when I was finally diagnosed with dysautonomia. I was so used to being underwhelmed and searching for more answers during appointments, but as tears pooled in my eyes there I sat thinking, holy shit... this is a real thing.
People always tell me, “Wow! You look so good!”
And I do. I look completely normal. This is one of the downfalls (and benefits;)) of dysautonomia. Because of the way I look, I’ve faced stigmatization from some doctors, and I know I’m not alone. It takes an average of three years for people to get a correct diagnosis for dysautonomia, and it is estimated that 50% of people with migraines, Chronic Fatigue Syndrome, and other invisible illnesses have some form of dysautonomia. It is often misdiagnosed as anxiety, depression or a whole assortment of other things. I feel so fortunate to have access to educated doctors who were able to nail my diagnosis in four months, a time period that felt like an eternity, but I now see as a miracle. Misdiagnoses is so common due to the lack of awareness about dysautonomia, so I want to use my voice to spread awareness. I was quiet about this experience for a long time, but it is my obligation and calling to share.
Dysautonomia is a blanket term for malfunctions of the nervous system, which can manifest in a variety of ways. If you are interested in learning more check out this website http://www.dysautonomiainternational.org/page.php?ID=34. We have still not uncovered all the forms of dysautonomia I have, but I will keep everyone updated as I do more testing and see the only dysautonomia specialist in San Diego this October.
From my thoughts on Eastern and Western medicine, and how to utilize the both, to stories about receiving biased medical care for having “made up my illness”, bad doctors, having to prove to people I don’t have an eating disorder, my coping mechanisms, and my pet dinosaur Ganto who I am writing a children's book about, I have many thoughts to share and posts coming up so stay tuned!