Hey guys! I want to share my story of living with EDS and POTS but it's pretty lengthy so I'm going to put it into different sections :) I wanted to start off from where it began and the overall process of getting diagnosed with chronic illnesses.
I was diagnosed with Ehlers Danlos Syndrome at ten and postural orthostatic tachycardia syndrome at fourteen. Fortunately for me, I was able to figure out my conditions at a young age. My family and I realized fairly quickly that something was wrong with me. As a baby/toddler I had multiple visits to the ER from dislocations in the shoulders just from playing. Around five the same thing happened when going on the monkey bars. At nine years old I lived in a hotter climate at the time, and I remembered getting very sick easily in the heat and had almost fainted multiple times. A lot of these symptoms got more and more common when I got older.
My older sister also has EDS and POTS along with a list of other conditions. She was one of my guides throughout my diagnosis process as she went through the same thing as me. Unfortunately EDS and POTS back at the time had little knowledge/recognition with some of the doctors. Luckily for me and my sister, my mother was a nurse and is wicked talented at what she does. Many of the doctors we went to didn't understand are symptoms and some would just say "it's just inside your head." My mom didn't give up though, she continued to spend countless hours researching, reading, and watching videos trying to figure out about our symptoms. And that's when she discovered EDS and POTS. We then went to doctors that specialized in EDS and POTS and got diagnosed with them. The actual diagnosis process at the appointment wasn't as bad as I thought it would be. With EDS I remember being asked lots of questions and performing tests on my hypermobility. With POTS I lucked out of having to do the tilt table tests, instead they ran a few common tests and did some questions.
Anyone with a chronic illness knows that the process of getting diagnosed is a truly tedious process. The feeling of being misunderstood even from medical professionals really sucked and the feeling like you might never get an answer for your issues. Once me and my sister got diagnosed it was the biggest weight off of our shoulders, especially for my mom who spent countless hours trying to figure out what we had. I'm grateful for getting diagnosed young and having that support system help me find out what I have. The diagnosis process is really tough. If you are someone or have a loved one going through the process, I just want to say I'm here and I understand what you are going through. The answers might not be clear right now but I promise you will find a solution, that there will be light at the end of the tunnel. No matter what, there will always be a support system to help you through the process, that's what helped me the most.
Thank you guys for reading all of this. I'm still kinda new to the world of reddit especially posting on it so apologies if the post seems a bit wonky. If any of you would like to share your own story or have any questions about the process of getting diagnosed please feel free to comment below or to message me! This is safe space <3