The 11 Years I Unknowingly Lived With Dysautonomia
I often hear (and speak) of what life has been like since being diagnosed with my chronic illness, but it’s not everyday that I read of the struggles one goes through before receiving that life-changing diagnosis. For my first time publicly speaking about my own health, I thought it would be best to start from the beginning: the 11 years I was living with dysautonomia and didn’t even know it.
From as far back as I can remember, I was a relatively low-energy child. I preferred reading to sports, although I did play soccer for three seasons. I didn’t need much sleep, and although I always had some trouble falling asleep, I was able to jump out of bed in the morning like any pre-teen adolescent. I was a bit finicky, as I struggled with mild obsessive compulsive disorder (OCD) as a child, but I was able to function normally.
Overall, nothing seemed out of the ordinary until I was in late elementary school and I was suddenly struck with three to four bouts of strep throat that left me bedridden on and off for several weeks. Immediately my parents and I found it odd that instead of struggling from the typical sore throat, I would vomit up to 20 times per day. Prior to this, I’d only had one small run in with throwing up, so this was an entirely new experience for me. I was put on several rounds of antibiotics and eventually prescribed a medication, a wonderful little pill that has since become a supportive friend of mine.
At first I chalked the fatigue and nausea that I felt after that to the long, slow recovery process that comes from being so sick so many times. Like when one has a cold, it was difficult to remember what “normal” really felt like. I kept pushing through and eventually came to just accept my new “normal.” It went on like this for years – eleven of them. Every day I was nauseous and exhausted, to the point that some days it was all I could do to get up in the morning and force myself through the day. Eating became an immense chore; for random periods of time I’d find myself forcing down food that had previously been delicious and exciting. When I suggested to my parents that I thought something was wrong, they struck fear into me. They threatened me with various tests that sounded horrifying to my 12-year-old self. They were exasperated with me, thinking I was overreacting, and they sought to end the discussion. After a time, they changed their stance. I saw my pediatrician, who half-jokingly suggested I could be pregnant, before insisting that it was merely puberty or perhaps anxiety. I was prescribed anti-depressants, which didn’t last long because they immediately made my nausea worse.
The worst part of being sick and not knowing what was wrong was the feeling that I was in it alone. I knew there was something wrong with me, but no one else seemed concerned. My father had dealt with various unrelated health issues throughout my childhood, so both he and my mother were preoccupied with his health – and rightly so, as his were far more urgent and life-threatening than mine. I vividly recall many occasions in which my friends told me to stop complaining about gym class, ignored the horrible nausea and dizziness that consumed me during meals, and the confused looks doctors gave me when I mentioned my symptoms. No one quite believed me, or they thought I was overreacting to anxiety or “normal” issues. So for many years I gave up. I kept pushing through, despite feeling sick to my stomach every single day. Somehow I made it through middle school and then high school.
After my wisdom teeth were removed I was at the sickest I’d been in my life. I spent days on the bathroom floor unable to move. By this point I had developed a small mastery over my condition – I almost never actually vomited anymore (which never alleviated the nausea anyway), but the nausea would remain for hours. I found a friend in my first period teacher (if you ever read this, thanks Mr. Negaard), who was extremely empathetic of my stomach issues and would often allow me to go to the clinic and lie down and retrieve my beloved medication during his class.
This may not seem like a big deal, but when your school only allows for a certain number of absences and tardies (even if they are excused for very valid reasons), this was a life-saver for me. It also affected me deeply, as this was one of the first times someone had validated my poor health. This was someone that wasn’t telling me to get over it or that it was in my head, or that it was just a phase. He made me feel more human, and it was something I sorely needed at a time when not even my closest friends knew or understood what I went through on a daily basis. It took me roughly seven years to get this, and a decade later it still means the world to me.
I began dating a boy who apparently experienced a different form of dysautonomia – something I came to truly understand years later, after our breakup and my diagnosis. He was constantly complaining about one thing or another, making every thing from light exposure and high temperatures, to low energy and small appetite, seem like tremendous issues. At the time, I was perplexed by his need to complain about what I saw as completely ordinary things, but years later I know that he was merely complaining about the same symptoms I experienced, not knowing that they were abnormal. I’d been so focused on my nausea for so many years that the many other symptoms that come with my illness were able to slip past my radar and be not only a part of my “normal,” but an actual part of what was normal to me. I couldn’t understand what he was talking about then, and now I know that it was his focus on his own issues that prevented him from helping me understand mine – his selfishness kept me alone, even when I had unwittingly found a comrade.
Somehow, through what I can only describe as stubbornness and an odd mix of self-loathing and self-love, I graduated from high school and began college. As luck would have it, my dorm was on the opposite side of campus from all of the dining halls, so in order to eat I had to walk a mile or two and then walk up the four flights of stairs back to my dorm – because yes, we had no elevator. We also had no air conditioning, so I was forced to deal with quite a lot of physical stress that year. My dad constantly sent me “goody boxes” filled with snacks like potato chips, soup, and the stereotypical college ramen noodles, as well as lots of Gatorade. Years later I can only smile at what was a miraculously but unwittingly perfect thing for Dad to do, as POTSies (someone living with POTS – postural orthostatic tachycardia syndrome) need lots of salt and electrolytes, and it was probably this that helped me survive my freshman year. But even with this, I spent many nights sitting on the communal bathroom floor, terrified of throwing up, being forced into an ambulance and dragged to the hospital for an evaluation, as was the university rule used to attempt to combat alcohol abuse on campus. Again, I was alone. Shivering and queasy, alone in the dark, trying desperately not to wake anyone up and not to throw up. It was hell.
For the first five weeks of my junior year of college I became too sick to do much of anything. All of the symptoms I’d had that were previously background noise suddenly jumped to the front of my attention. In addition to my nausea reaching a peak high, I was increasingly dizzy, constantly dehydrated and overheated, sleep-deprived, fatigued to the point of exhaustion, and my head just felt…”weird.” I wasn’t able to walk more than a few feet at a time; a walk to class that would normally take 10 minutes took me two hours to complete. Even in my sleep I was in agony and my rest was…well, restless. I felt like I was dying. My body was failing and my quiet anxiety about my health that had rested in the back of my mind for all those years suddenly leapt full force at me – I was terrified.
This is what it took for me to finally reach out and demand help. A piece of my soul shattered that day when I called my parents at 7 a.m., sobbing and throwing up, and they told me they were coming to take me home. It took over a decade of putting one foot in front of another and then another five weeks of feeling like absolute death for me to be brave enough to assert that I needed help. It took all of that to get people – family, friends, and doctors – to take me seriously. I looked as horrible as I felt, and finally people took me seriously. I learned to be my own advocate and fight for myself, something I had sorely needed for years but couldn’t do for myself as a child or teenager.
The story gets much better, but that is for another day. Today it’s important to focus on what so many people who deal with chronic illnesses for years need: You.
We need your support and understanding when we come to you. Don’t tell us it’s in our heads or that we are overreacting. Don’t ignore us or assume we are “just kids” and will get over it. It’s hard enough to be your own advocate as an adult, but as children and teenagers it’s that much harder. At almost 28 years old I’m still struggling to find my voice and reach out.
I hope this portion of my story can help some of you find the courage to speak out about what is going on with your health and inspire others to be supportive of those who need you. My doctor has said that those of us who struggle with silence years before diagnosis have an extra burden to carry than those who are diagnosed quickly. We are the silent warriors who fight our own internal battles every day. If you or someone you know is going through something like this, please reach out. You never know just how much a small act of kindness or understanding can change someone’s life.
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