School with POTS & EDS

After writing my first blog post, I felt so great. Finally having an outlet and a place to keep everyone I love informed on my life is fantastic. After giving that post (probably way too much) time to seep in, I’m back and ready to share more. This time I thought I would bring everyone up to speed on my schooling- how I personally am dealing with going to school with chronic illnesses. If you haven’t read my first post- please check it out here!


I have always been very driven when it comes to school; I took as many honors classes as I could as soon as I got into middle school, and my sophomore year was no different. Taking away my symptoms, the class load I signed up for was one that I could handle with ease. I’m good with time management, I use every opportunity I can to finish my work- there should’ve been no problem. Unfortunately, my symptoms were very much present, and this load was killing me. I pushed through the year with late nights and lots of stress, and grades that- to me- didn’t show how much energy I was putting into things.  The class load I had signed myself up for my junior year was even worse than the one I had pushed so much to get through- with predictable results: this school year has been harder than any previous school year.

I think the hardest thing I’ve dealt with since being sick is not the pain or fatigue, but it’s trying to deal with the fact that my life is forever changed because of these illnesses. Despite the amazing technology that doctors have access to, and the wonderful advancements they’ve made, finding a cure- or even a reliable treatment- for either of the chronic illnesses I have has just not happened yet. That doesn’t mean I’m not hopeful that they will find one, of course. It just means that right now, this moment, my reality is that I will have these two chronic illnesses and their fun symptoms indefinitely. Dealing with this reality has not been easy, and I’m not sure that even a year after being diagnosed that my mind has fully wrapped around the idea of being “sick forever”. I’m never going to stop looking for answers or ways to find relief, but I am trying to make peace with the way things are now, so I don’t feel stressed and depressed until that day comes that I find more answers.

The main way I have dealt with trying to get myself to adjust to my diagnosis until recently has been to….not deal with it at all.  Up until the past month or so,  I’ve just been ignoring my worsening symptoms and the cries that my body has made for me to make a change. I knew that I could make it through this year, I could pass my difficult classes, I could balance school and theatre and my health. I mean, I COULD do all those things, but I’d sacrifice happiness, and any chance of better health. I have a  great boyfriend, great friends,  a great family, a great artistic outlet. I’m learning to drive, I worked for a while, I’m looking into college…but for things I’ve been excited about since elementary school, I sure wasn’t having any fun. I was torturing myself- trying to live life as if I’m not sick.

Thus, the changes started. After closing our all school musical that I had the privilege of assistant stage managing, the theatre department at my school goes into rehearsal time for our competition play of the year. I was also supposed to be stage managing this show, and I was so excited and ready for diving into more of this amazing position that I have discovered a passion for. But, two weeks ago I stepped down from stage managing this show. I loved every minute of the rehearsals I attended, but I was falling behind on my school work, and I was not taking care of my health, or really myself in general.This  change, although I’m still not happy that it had to happen, has really helped me a lot. I wish that I could be continuing like normal, but I know this was the best decision.

After this, my parents met with my assistant principal at my school to discuss my options as a student with chronic illnesses. Unfortunately, there aren’t many. I can really only control my course load; I can’t take half days of school or get any major extensions on assignments in my harder classes. My parents and I re-evaluated after this meeting, and decided that not only do I need to free up time to do homework, I needed to free up time to work on my health; to delve into taking care of myself and doing everything that I can to make it easier to get through the day. We spoke to my assistant principal again, as well as my counselor, and have changed my schedule to take me out of AP physics, and to put me into Pre-AP, just a level change to save me  some stress. Although not totally thrilled with this change either, I have noticed a significant difference in how I’ve been feeling physically, as well as mentally.

Having time to keep my room clean, to lay around and watch shows, to invest into my relationships, to really be present and enjoying my life as I’m experiencing it is just not worth sacrificing for a class credit on my transcript or a play on my resume. I’m proud of myself for finally having these important realizations about what I need, and  for taking action to make the changes to meet my individual needs. Changes won’t stop here, and hopefully with this extra time I’ll be able to update more on things going on in my life! Thanks so much for reading!

Staying strong, Spoonie Cutie.