Initially, I responded to my EDS and Pots Diagnoses with relief. Many blood tests had come back normal, so I felt validated when something was actually wrong.
Today, though, I hit a huge wall of realization that, although it doesn’t mean my life will be cut short, it will impact my quality of life and the music career I’ve worked hard to develop.
How does one cope with this?
Over the years, I subconsciously crafted a future version of myself, like many of us do without even realizing it. Can I still make it that far, or do I need to lower my own standards?
I’ve asked myself if I should bother to practice piano, or should I not since I’m likely to develop severe arthritis anyway? Is it better to learn and lose my ability to play, or spend the time doing other things?
How could I be so centered on my struggles when there are so many out there who can only dream about the life I have?
The thought of practicing music has become a chore because I’m afraid of developing more just to lose it all someday (not to mention all the trauma that’s been centered around music). I’ve become embarrassed of the ugly compression tights I have to wear on days where I have to stand for long periods of time.
I’m frustrated with the amount of time and money I have had to spend at various appointments, thinking about the things I had hoped to save money for and how much better of a musician I would be if I spent that time practicing.
I also am frustrated and embarrassed of my intense brain fog that leaves me in a state of confusion and with short term memory loss on the daily.
I keep trying to push past these thoughts because I want to be successful in my career, and I’m tired of victimizing myself and feeling cynical about everything.
I feel guilty about these thoughts because I think I’m being selfish and over-dramatic about a condition that won’t kill me. There are so many out there who are struggling with terminal illnesses.
How could I be so centered on my struggles when there are so many out there who can only dream about the life I have?
I ask myself why I’m sharing all of this on social media, and I’m pretty sure it’s for two reasons:
- I want to use my experience to bring awareness in order to help others in similar situations.
- The general amount of isolation and loneliness I’ve experienced from COVID and the case has been debilitating.
I’m searching for ant hint of the empathy I give so freely. I’ve always given so much of myself to help others when all I want is kindness and friendship in return- Why is this so difficult for me to attain?
Am I angry? Am I bargaining? Am I depressed? I don’t know.
All I know is that I’ve been stuck in the stages of grief for the last year, new waves cresting at unexpected times.
However, I have hope that I can learn more about my body as I progress through my life and career; I have hope that I can learn to manage my symptoms and make the most of my limitations by focusing on my abilities.
Eternal Metamorphosis 