Growing up with Undiagnosed POTS

 

Note: My fellow POTSies will understand my sock getup. You get the struggle! :)

I fainted today. There’s usually this weird time post-faint where you can’t quite move and you can’t think all that well and you just lay there. When I started coming back to planet earth, I started thinking about the first time I fainted and what it was like growing up with POTS and living without the diagnosis that I am so thankful to have today. Being told that it was all in my head or that I should just try yoga (thanks, doc. Real helpful) and how I actually started to believe that maybe my doctors were right. That maybe there wasn’t anything wrong with me, that this was just life for everyone, and I just needed to suck it up, buttercup.

I’ve been thinking about all the things I would push myself to do that I shouldn’t have and all the things that I thought were “normal” and the fact that I actually thought everyone experienced what I did. I truly thought that I was just weak, not just physically weak, but mentally weak. It makes me sad to think about. And it's a BIG reason why I'm so open with my condition. Because I know there are girls out there with or without a diagnosis that are feeling how I felt. 

Weak, because you have to take 3-minute showers and don’t even think about making a habit of blow drying your hair because, let’s be honest, it leaves you too sick. Weak, because you can't keep up with your friends and you can't go to social events because you’re just too exhausted. Weak, because you feel too sick to go to school, but you don't even know how to explain your symptoms so you just keep your mouth shut, suck it up, and go anyways.  Weak, because you can’t do sports even though it was all you look forward to in High School. Weak, because you truly think everyone feels like you do every day, but you just can’t handle it like everyone else can. Everyone’s experiences are different, but from the conversations I’ve had with fellow Potsies, we all share the same feelings.

It stunk feeling alone in those feelings and looking back, I don’t think I’ve let myself feel much of that. I don’t think I’ve ever let myself feel the disappointment of the missed memories and experiences. I grieve the lack of a diagnosis through my Middle School and High School years and I’m mad at myself for beating myself up day in and day out for not being able to do what everyone else could. It may sound strange, but it truly is such a relief knowing that it’s not normal and it’s not all in my head. That my body does not react like it should, and the biggest relief is knowing that I am not weak.

What I would give to know that back then. To tell younger me to be gentler and kinder to myself. But I can’t. What I can do, is be gentler and kinder with myself now. To continue to share little bits of my story so that someone else who lives with this illness can hopefully feel the peace of knowing that they’re not weak and that it’s not their fault. That they’re not lazy and it’s not all in their head.

POTS is tough, but we are tougher, darn it!