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Why I Had Mixed Feelings After I Was Diagnosed With POTS

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“Your test results show you have postural orthostatic tachycardia syndrome (POTS), which I think was your suspicion. Well, you definitely have POTS, and I really think we can help you.”

I was shocked.

I sat in the hospital room with a smile on my face and tears in my eyes. Did she really just say what I think she did?

Oh, how I wish I had recorded that moment. I would have shown it to all the doctors who had told me before it was all in my head and to all the people who said, “But you’re too young to be in so much pain.”

I couldn’t stop smiling after the doctor left the room. I sent a text to my amazing boyfriend and my gorgeous best friend. “I got the diagnosis! I’m going to cry today. I just know it.”

I called my mom who was in the waiting room with my dad and little sister, and then I proceeded to tell the rest of my siblings the news. Everyone was so happy that we finally had a huge piece of this puzzle figured out.

But after a while, the initial rush of it all started to wear off a bit.

14 years.

That’s how long I have waited for this diagnosis. Next month, I’ll turn 20. That means I can take my healthy years, multiply them by two and it will still be less than the number of years I have been sick.

When I was around the age of 6, I got mono for the first time. Headaches were soon to follow. When I turned 8, I got mono again. By the age of 10, I had my first MRI because of my horrible headaches. That was the day I was diagnosed with migraines, which was only the beginning. I’ve been developing symptoms ever since, so many that I have enough to fill a whole page — printed on both sides.

It was hard growing up as the sick kid. It’s awful how the comments people make can affect you as a young child. I remember most of these comments vividly. The first was after church on Sunday morning. We were waiting inside our 15-passenger van outside of the Piggly Wiggly, while Mom and Dad got some groceries. Everyone seemed to be talking and laughing so loudly. I was curled up on one of the seats and on the verge of tears when I asked everyone, “Could you quiet down? I have a migraine.” One of my sisters (who I dearly love and know she would never say anything like this now) replied, “You don’t have a migraine. Only old people get those. You’re just trying to get attention.”

That was just the first in a countless number of such comments: “You just don’t want to play with us because you’re lazy,” “You’re just saying that it hurts because you don’t want to help” and “Are you sure she isn’t just making it up?”

I was the 10-year-old with dark circles under her eyes who tried so hard to keep up with her friends and siblings and often couldn’t. I can’t count how many times I felt guilty for saying no to something I couldn’t do or the nights I cried feeling like no one believed me.

This is how I mark my memories. I measure years by allergy shots, when I threw up anything I ate with dairy in it (so in my house, pretty much every meal), when I was told I had hypoglycemia, the year I lost almost 40 pounds and became malnourished because of all the things I cut out of my diet (eating at camp was a nightmare), the first time I passed out, the time I had to quit my first non-camp related job due to brain inflammation, the spring I had to drop out of college (after only a month) because of a systemic candida infection or deciding this year to give up my American Red Cross Life Guard certification, which was a major part of my identity since I was little.

I tried not to let these thoughts take away from the moment of my diagnosis. I wanted to cherish it as best I could and at least hold onto that initial happy feeling until I talked to my family in the waiting room.

The doctor came back in and told me what the treatment plan was, and then she sent me off to the lab for some blood work.

I sent a text to mom telling her where I was, so she could come find me. Finally, the face of someone I love! I got a great big hug and explained what the doctor had said. I had my blood drawn by the quickest nurse in the South (seriously, Mom didn’t even see her switch the vials!), and then we were off to get dad and my little sister, Katrina.

It was then that I realized I wasn’t the only one with mixed feelings, as my dad said, “So I guess you got good news and bad news today.”

He was right. His little girl would more than likely never get better.

You see, POTS has no cure. It affects everyone differently. Some are able to manage it well with lifestyle changes and the help of good doctors, while others may have to use wheelchairs or are bed-bound. Many people, like myself, go back and forth between these situations.

Few people have even heard of POTS. I didn’t even know about it until last year, and I’ve had it for most of my life! The lack of knowledge can make life so hard for people with POTS. A heartbreaking amount of people walk out on us because they can’t handle it.

So thank you for sticking with me through this. I hope to write many more posts about the effect this syndrome has had and will have on my life and the lives of so many others.

Follow this journey on Free Spirit Dreaming.

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Image via Thinkstock Images

Originally published: November 8, 2016
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