Navigating Life with POTS and Pans

Hello everyone! I am writing to you from the floor of my dorm room at 11pm on a Saturday night. Yup pretty weird I know. What’s weirder is that ten minutes ago I was on the floor of the bathroom, gross I know. So the question remains, how did I get there? POTS!

I live in a suite and there are oftentimes many of us in the bathroom at once. This particular time I was using the restroom and some of my suite-mates were brushing their teeth. I started mentioning I didn’t feel well and once I stood up I was like oop I’m not feeling hot, so I sat down and soon started having slurred speech, my eyelashes were spazzing and I was *out of it.*

However, I had told my suitemates how to handle the situation if something like this ever happened (and they had had plenty of previous opportunities to practice haha). My suitemate Emmy laid me down, got me a Roar (my fav electrolyte drink) and made sure I was alright. My other suitemates made sure my head didn’t touch the bathroom floor 🙌 so thank you Avi and Izzy for that because ewwwww. The bathroom floor is for real not the ideal place to have an episode.

I mention all of this to talk about the importance of setting yourself up with a support system. If I hadn’t talked about POTS to my suitemates, like I would have done several years ago, I would not have had their support when I needed it.

When I was first diagnosed with POTS I thought it was something that I needed to hide, that people would look different at me and that it would be a bad thing to tell people I had POTS.

I realized this was some really flawed thinking. Once I began treating POTS like just another thing about me rather than some big scary skeleton in my closet, that’s exactly what it became. It no longer loomed over me, it just became part of my story, and that is when my perspective on POTS changed.

As my perspective began to change and I began to tell more people about the fact that I had POTS I built stronger bonds with people and formed some of the best relationships in my life, including with my amazing mentor Nancy who helped me through some really tough times my senior year of high school.

Furthermore, telling people about how I struggled with POTS meant I had more people in my corner. I was no longer putting it all on myself to carry, I was allowing myself to share this burden with others. With a lighter load I was able to help others in their own difficult journeys through life since I was no longer so preoccupied with my own.

Having more people in my corner also assured me that if I ever had an episode there were people who knew how to take care of me which gave me peace, knowing that even if something did happen I didn’t need to worry about it, because I had a support system.

Importance of Diverse Support Systems

Also let’s face it, POTS is difficult. sometimes what you need is someone to talk to who gets what you are going through, because of POTS inherent invisible nature it is hard to talk about the difficulties that you are going through with someone who does not understand. That is why it is also important to have diverse support systems. Having different friends for different aspects of yourself does not make you duplicit, it makes you a complex human being. Sometimes what you need is someone who gets it. I will never forget my joy at a coffee shop when I realize the girl next to me also had POTS. I started a conversation with her once I saw her “Standing is my Cardio” sticker on her laptop. We talked for quite some time and it was so fun to talk to someone who understood. Because at the end of the day, humans crave to be understood, and so sometimes what you need is someone to talk to with POTS who understands what you are going through. If you are looking to join a community, join the GroupMe!

If a tree’s roots only ever grew in one direction the moment a strong wind came it would be blow down. Instead, a trees roots grow in many different directions so that when a strong wind comes they may sway, but they will not be blown over. Growing our own diverse support systems has the same effect. When we begin to feel overwhelmed or are having a flare-up, having people to lean on so that we are not blown over by the winds of POTS and life is crucial.

Diverse systems will look different for everyone. For me it is about having many people in different areas of my life that I can lean on. I have my parents, my friends from my various classmates, my suitemates, my friends with POTS, mentors, and my friends from home. Having people in so many different areas of my life has been so helpful, especially in this windy time in college 😉

Maintaining Relationships

When times get tough it may feel easier to pull back from others. However, just like any tree we need to water and nuture ourselves so that our roots can continue to grow, stronger and deeper.

Call the friend you haven’t talked to in a while, make the extra trip to bring a meal or treat to your neighbor, and procrastinate time with your friends. Procrastinate…with people…huh…? Let me elaborate, the friends you choose to “waste time with” (although in my opinion it is never a waste) are those who you will grow closer with. Time is the rich soil in which friendships grow.

All relationships are important, not just the ones with people who know you have POTS. All relationships have the potential to grow into something deeper so it is never a waste of time to nurture relationships. That doesn’t mean you need to be besties with everyone, but expanding your circle is never a bad thing, you may become friends with someone that you would never have expected to 😉 Calling people is something you can do if you are bed-bound and it is super helpful because it can re-center you and pull you outside of yourself, giving you perspective, which I alwasy find personally helpful. And also calling loved ones, friends, and relatives is just good for the soul.

Talking about POTS to others

Talking about POTS to others is hard especially because many people cannot emphathize with you since they have no idea what you are going through, so often you’ll just get pity if you talk about it. That’s why I never brough up POTS for so long, because I did not want to be pitied or looked at differently. But then I realized the reason I didn’t like pity is because it felt belittling but once I realized I was the only one who could belittle myself telling people about POTS got a whole lot easier.

I also realized my favorite mode of communication, humor. I found that joking about POTS made it easier for others and myself to digest. It also was a better way of talking about it in everyday context.

Not thinking about POTS as a big scary skeleton in my closet and just something else that was a part of me helped me to talk about it normally in a conversation (if it was applicable, obviously :). This helped me so much and once I was able to do this I realized I was growing in knowledge of who I was. It meant I not letting POTS define me, or hold power over me. It meant I was taking back control of my life and my relationships.

I hope that you are able to take that first corageous step forward and extend your roots out a little deeper. (One great way you can do that is by joinging the new GroupMe 😉

Remember to have grace for yourselves and others! Have a great rest of your week!

❤ Ashley