My name is Melissa and I’m 26 years old. I always planned on working in the medical field and having a huge family. I’m really excited that this will come out in October because October is Dysautonomia awareness month. The average Dysautonomia patient waits six years for a proper diagnosis. Hopefully we can reduce that number by raising awareness and educating people. I wrote a first draft for this blog and my husband read it while we were in the emergency room. He told me it was good, but that I sugar coated our life and what I go through. A classmate and fellow chronic illness fighter, Tia advised me to be honest because I can’t help people if they can’t relate to my struggle.

The first sign that something was wrong was when I passed out in the library during finals week of my first semester senior year of college. I thought it was just stress, but after passing out at work, in the cereal aisle at the grocery store, and during a final, my mom came down and took me to the emergency room. After many tests, the EKG came back showing that I had Wolff-Parkinson White syndrome. My heart had an extra electrical pathway. My mom took me back to Cleveland where we saw three cardiologists that all confirmed the diagnosis. I was told I’d need to have a cardiac ablation to fix the problem. I insisted it be done during my spring break so I wouldn’t miss school. The procedure took longer than expected, but it was successful.

After the ablation, I had to follow up with the a cardiologist at school every two weeks. I wasn’t recovering like I should have been and I developed tachycardia. The cardiologist thought it was just my heart recovering and it might last for three months.  But after four months, I seemed to be getting worse. My cardiologist diagnosed me with inappropriate sinus node tachycardia and put me on heart medication. A few months later, I got married and moved to Camp Lejeune, NC where my husband was stationed. My medication seemed to be working until I passed out while going down the stairs. I was referred to another cardiologist who tried adjusting my medications. Soon after my husband deployed and out of fear of passing out while alone, I was desperate for answers. After passing out at work and needing an ambulance, I was referred to a civilian cardiologist. He sent me to get a Tilt Table Test which confirmed that I had Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia. He added medication to raise my blood pressure and had me keep track of my vitals. A few months later, I started getting sick several times a day and lost 15 pounds. I was juggling work, school, and my condition. When my husband came home after 9 months, I was terrified he wouldn’t be able to adjust to my new life. He was amazing and changed his whole life around that day. I was so relived to have someone to help, but I was also grateful that I had to learn to do it on my own when he was deployed. It was comforting to know that I was capable of doing it on my own. A few months later, I started getting random hives and then I started getting migraines, eye problems, and GI issues. I also began getting several viruses and infections a month. I noticed that my body handled the virus a lot different than the person I caught it from. While they just needed to stay home and rest, I ended up in the emergency room and needed several medications to function. I was referred to a GI specialist and he found my colon was twisted, I had issues in my intestines and with my gallbladder, indigestion, pain when I ate, and pain under my ribs. When my GI specialist couldn’t figure out the reason for my pain and wouldn’t learn about my condition, my cardiologist refereed me to the Duke POTS clinic. My experience at Duke was amazing. The doctor and nurse wanted to fight for me. They knew exactly what I was talking about. I was put on more medication and a strict diet to avoid triggering symptoms and to gain weight.

I didn’t plan for this. I’ve had to mourn the life I thought I’d have and make a plan b. I didn’t think I would be sick and in pain every day. I didn’t think showering, cooking, and standing would be painful. I didn’t think every time we went to the store we would need to plan around my condition. I didn’t think we’d need to figure out how to prevent my legs from turning blue in our wedding pictures. I didn’t think I’d be told my body might not be able to handle a pregnancy. I’ve found that a lot people with chronic illnesses crave normalcy. We want to hold on to our old lives, even if it’s only on the outside. I went months at my new job without telling people. I didn’t want to be labeled as the “sick girl”. I dreaded walking into class on the third day with a heart monitor strapped to my chest with wires that I couldn’t hide. An hour into the class, a girl named Tia sat next to me. She told me she had a chronic illness and we found out we also had Dysautonomia in common. It meant the world to me because hearing the words “me too” made me realize I wasn’t alone.

I’m currently working and back in school. I ultimately want to get my Masters in Nursing. I’ve learned that even if I’m in pain, or sick, or depressed, I have to keep going because I never know if tomorrow I’ll end up in the hospital and have no choice but to miss work and class. If I stayed in bed every time I felt horrible, I’d live there and never get anything done. My condition has taken so much from me, but I’ll fight for as long as I can’t to prevent it from taking my dream job no matter how difficult it is. One thing I regret is putting my pride before taking the opportunity to educate people about my condition. I was so afraid of being labeled as “the sick girl”, when I should have been raising awareness so that someone else might not have to go years without a diagnosis. I have a chronic illness, but that doesn’t define who I am. Don’t be ashamed of who you are, you might inspire someone.