When Dysautonomia Turned My Life Upside Down
Writing this from a 15-year perspective feels surreal. I buried all those awful memories because I just wanted to forget. But if re-living the pain and angst will help anyone else out there struggling, then that’s worth it to me.
HOW IT ALL BEGIN
My childhood and upbringing is not anything remarkable. I came from a loving home, had a roof over my head, and was well fed. I was a super active and healthy kid —rarely got sick and involved in many activities (karate, gymnastics, dancing, piano, and painting just to name a few). Fast forward to college and I had the typical experience with parties and pre-med studies. As graduation approached, my motivation to go to medical school was waning and I wanted a break. I intentionally bombed my med school interviews because it was easier than telling my parents I didn’t want to go.
After graduating, I joined a gym to continue my active lifestyle while living at home. I made all these glorious plans to travel for the next year, and afterwards had the intention of entering the creative field. Sadly, I never got the chance because 2 months later I became bedridden literally overnight unexpectedly. As I was walking up the stairs to my room to shower after going to the gym, my legs gave out suddenly and I couldn’t support my weight. I crashed to the floor. I couldn’t see straight and everything was spinning out of control. But the most frightening part was the immense chest pains, and no matter how much air I was breathing in it felt like I was suffocating. My brother found me and ran to get his inhalers because he thought it could have been an asthma attack. But it gave me no relief.
I was rushed to the ER because I thought I might have had a clot in my lungs since I was on birth control — I knew several people who had gotten clots from the pill. After labs, x-rays, and breathing treatments, nothing was found and I was sent home and told to relax. Each day, a new symptom would come on. I had everything from my head to my toes — dizziness, headaches, feeling faint, difficulty breathing, chest pains, numbness and tingling all over with pain, stomach pains, nausea, bowel issues, fatigue, could not support my weight, and it kept on going.
[For full description of my symptoms, click here]
SEEKING ANSWERS FROM DOCTORS
I was desperate to figure out what was wrong because I went from 100% healthy with no medical issues to suddenly barely functioning. Every breath I took felt as if it could’ve been my last. You don’t realize how much energy it takes to do something as simple as breathing. I saw numerous specialists -- GI, pulmonary, allergy-immunology, etc and was told I was normal or there's slight abnormalities but nothing concerning. Each prescribed me medications but would not fully explain why I needed to take them.
"Just take it. You'll feel better."
But I didn't get better….
THE LAST STRAW
I continued to decline over the next few months and was no closer to getting any answers. One particularly bad night, I was really struggling to breathe and my dad wanted to take me to the ER. Reluctantly, I went to ease my dad's worries. At this point, I’m frustrated with doctors and was just going through the motions because I had lost all hope that anyone could help me. Despite feeling horrible, I'm lying in a patient bed and waiting for the doctor, cool as a cucumber --- no hyperventilating, no increased heart rate. I was telling myself, if this doctor says panic attack or anxiety then I'm never going to the doctors ever again.
This male doctor abruptly pushes the divider curtain and grabs my chart. Flips through a few pages.
"Well your lungs look good! Better than most of the patients I see. I'll give you some anti-anxiety meds and you can be on your way."
THAT WAS IT!
I couldn't get myself out of bed, couldn't eat, couldn't breath for MONTHS! And what did the doctors tell me? "Just practice some relaxation techniques." Really?! How could I have anxiety when I'm literally lying in bed sleeping all day? Why was it so hard for them to believe me? Because I was young? Because I was a woman? Because I had no significant health history before?
This came during in a time when I had the least stress. I was having the time of my life --- no responsibilities, hanging out with my friends and family, exercising, enjoying my hobbies, etc. And anyone who knew me, would never describe me as a stressed out or anxious person.
FIGHT ON MY OWN
Lying helplessly in my bed, I made the choice to fight to live. I couldn’t accept that being bed bound was going to be my life, and I wasn’t going to die without trying. Conventional medicine truly failed me.
Without any medical help or treatment, I had to figure out what worked and didn’t for me. There were plenty of days where I pushed myself so hard to the brink of dying. Progress was definitely slow and it took about 3 years for me to reach 'normal,' which at my best was 85% of what I used to be. I've never been able to get back to 100%, but at least I was able to function as close to a normal person.
Now, knowing that I have dysautonomia based on autonomic testing done in December 2018. Many of the lifestyle changes I had experimented with on myself all these years made sense and explained why I’ve been able to improve to a certain point.
My experience is why I decided to start this blog. I realized I’m not the only one who has this. And there are many others out there living with dysautonomia who don’t even know it. I want to bring more awareness to the world and hopefully to the medical profession so no one else has to suffer for as long as I have. I hope to inspire others with dysautonomia or any chronic illness that there’s a light at the end of the tunnel, and that you don’t have to let any disorder or disease take your life away from you.
I hope to hear your story one day!