Chronic Illness

 My journey with my health hasn't always been an easy one. From the time I can remember, I have always been sick in one way or another. When I was four years old, I was diagnosed with an "unspecified fever disorder." No doctor could give my mom any real answers to explain why I would constantly spike 104 fevers with flu-like symptoms and body aches for 4-5 days at a time every few weeks. I unfortunately dealt with this for most of my childhood. However, one day, things took a terrible turn for the worse.  I was about 6 years old when I spiked one of my routine fevers, only this time, when I woke up, I was a completely different person. My brain was foggy- I couldn't tie my shoes anymore and lost my handwriting and fine motor skills. Worst of all, my usual outgoing, creative, and adventurous self was gone, and instead, I felt so much anxiety, and my brain couldn't filter out the world around me. My entire existence seemed to vanish. In JUST one day- I had completely lost the ability to do the things I loved.

I couldn't play the piano, and my mind and body were disconnected entirely. I was so young and confused, and I didn't understand why everything suddenly became so hard. There was so much I wanted and knew how to do- yet my body wouldn't allow it. I became disconnected, embarrassed, and ashamed because I thought I was dumb. My mom saw my struggle, but I did my best to conceal the truth of the situation. From the outside, I just appeared "non-compliant," but the truth was, no matter how hard I tried, I couldn't make my body cooperate. At the time, I honestly didn't realize I wasn't dumb, nor did I do anything wrong; I was sick. Very, very Sick.  A few years later, around ten, we discovered my back molars were decayed and completely rotten in my mouth. They were soft and mushy in my mouth from my body's constant war with itself. In an attempt to get to the bottom of my health issues, my mom saw 6 different dentists until she found a dentist who finally agreed to remove my molars, not simply try to bandage them up with root canals, which she felt would exacerbate the issues. Not only was her theory correct, but by removing the molars, I gained my LIFE BACK, fevers wholly disappeared, and my health tremendously improved.

For the First time in my life, I finally felt good! That year, my mom pulled me out of school to help me recuperate, and I worked incredibly hard to get back on track. With my health came newfound freedom; I could do sports, hang out with friends again, and just live my life- the life I always wanted. That was until 2021 when I got covid. I became so sick- I deteriorated in a matter of days. It was like when I was a kid, but it was much worse. I never did indeed recover; I felt like something was majorly wrong with me. Over 20 months, I would get COVID 5 more times.

Each time, I would take longer to recover, and I could no longer be as active- I would become so dizzy I would nearly faint. My fevers came back, which would leave me bed-bound for a week or even 10 days. I couldn't function without naps, and doing chores like dishes and laundry became extremely hard. I was beyond tired, beyond exhausted- I was fatigued. I tried everything: supplements, praying, yoga, eating well, exercise- everything under the sun, yet I only got sicker. I was so frustrated that I thought I was out of shape. I suddenly lost everything again. My freedom was stripped away from me.  I couldn't do anything I loved without immense struggle. It got to the point where I couldn't do it at all. Even small things like shopping would take such a toll on my body. I soon realized something wasn't right. My mom soon discovered, too, that something was majorly wrong when I started to pass out and could barely walk from one room to another. 

We began to search for answers, and we went from doctor to doctor, but they  were constantly dismissing me- I was told I was "stressed" and I had "anxiety." But I knew in my gut that it was something beyond anxiety. I began tracking my symptoms and vitals. I knew after brief research that what I was experiencing was anything but ordinary. In Early 2023, I saw a rheumatologist. The appointment was short. He performed a test on my joints, bones, and skin. He then diagnosed me with Hypermobile Ehlers-Danlos syndrome. He played it off as casual, which wasn't a big deal. He then prescribed me anti-anxiety medication, which I declined, knowing this was NOT in my head. That's when I started researching and discovered EDS isn't just a tiny thing. In fact- it explained a lot of my struggles. A part of the puzzle was solved- but I knew there was so much more. It only explained a small portion of my symptoms.

In 2023, I went to see a cardiologist. I explained my symptoms, and I told him about my heart rate spiking every day. I showed him the data that I collected. He did something called a "poor man's tilt table test." He monitored my heart rate and blood pressure; I would lie down, stand up, and repeat. Immediately, my vitals spiked- the monitor was beeping vigorously. I felt terrible for the five minutes he conducted the test. He sat me down shortly after and looked me in the eye; he knew the symptoms I was having were "real." He told me he's seeing many young girls with the same symptoms yet had no answers, and he feared the medical community was not treating us appropriately. He worried about our long-term care, YET. In the same breath, he also told me my results were an anomaly, that it would be "impossible" to continually have these episodes regularly, and that the culprit was most likely due to my medical technology not accurately recording my vitals.  He told me what every other doctor had told me- to limit stress, eat better, etc. (funny considering my crunchy mom didn't let me have sugar until I was at least 10 years old; I was raised the epitome of a healthy kid.)  I left that appointment feeling heavier than I when I walked in. I didn't understand how he could dismiss me- even though he saw it with his eyes. I had all but run out of hope that anyone could help me. 

Later that year,  I went on a trip with my close friend, who has a service dog, Hercules. Within minutes of meeting, he alerted me that my vitals were off. During the entire trip, he kept warning and alerting me. During the trip, he started to confirm my symptoms- I began to realize that my symptoms were real, that I wasn't as crazy as doctors had made me out to be. One night, my friend and I were talking. She started confirming my suspicions, and she validated my thoughts. She told me I wasn't lazy- and I most certainly wasn't insane. Having many health issues herself, she was able to recommend a neurologist she had used- hoping he would help me as he helped her. Months later, I saw him. As the nurses took my vitals, she instantly knew something was wrong. For the first time in my life, I was acknowledged. When the doctor came in, he monitored my vitals again. They were astronomically bad, the machine once again beeping frantically. He told me he couldn't be sure until he ran a more extensive test called the "tilt table test," but something was wrong. We scheduled the tilt table test months in advance. The day had arrived in January 2024 when it was time for the test. They first did a sweat test, attaching leads to my feet, legs, and arms. This tests and measures the amount of chloride in your sweat. Then, it came time for the tilt table test. You lay down on a table, and they strap you down. The table moves, eventually moving you to an upright position while monitoring your vitals.

During the test, I fainted several times- it was one of the most excruciating ten minutes of my life. Words can't even describe the feeling. It was miserable. Once we finished, I was diagnosed with small fiber neuropathy- alongside something called Postural Orthostatic Tachycardia Syndrome. It's a nervous system dysfunction condition. For the first time, I had answers. I felt relief that I got a diagnosis- yet I grieved for the life I used to have. I'm still learning how to navigate chronic illness, and I'm still fighting for answers- to be listened to. I soon realized that I wasn't alone in this struggle; in fact, there were people everywhere who understood this feeling. I wanted to share my story and spread awareness about chronic illness. I wouldn't be here if it weren't for people speaking out about their experiences and lives. If it weren't for my best friend and mom's support, I wouldn't be where I am today. I hope that my experience can make people feel less alone, and I hope it brings awareness to chronic illness and shines a light on the medical gaslighting that is actively happening.