What It's Like To Be a Performing Artist Battling a Chronic Illness
Happy October! For those who don’t know, October is Dysautonomia Awareness Month!
What’s Dysautonomia? Why does it matter? What does this have to do with artistic development? Let me give you a bit of background information about myself.
Through a majority of my undergrad experience, I always felt like there was always something wrong. I was always sick or not feeling well. I, “never just got a sniffle”, as my mom would say. I went through periods of daily migraines, stomach viruses, bronchitis, vitamin count drops, multiple bouts of strep, one which resulted in emergency throat surgery, and more. My senior year I ended up in the hospital for a week with something that was not common at all in people my age. Following that was months of not eating, extreme weight loss, fatigue and other symptoms I was not able to explain. I was out of school for nearly a month that fall. It pushed back my graduation a bit because I had to reschedule my senior recital for the following semester. My goal of a December graduation was crushed.
From January of 2019 forward, I was determined to find out what was actually wrong with me. I went to a million doctors and each ran the same bloodwork, finding absolutely nothing. A few months later a co-worker of mine recommended another doctor . So I made an appointment to see him and at my first appointment he said to me, “It sounds like you have something called POTS”, and made a recommendation to a Cardiologist.
I went to the Cardiologist and after heart monitors, echocardiograms, EKG’s, an ANSAR test, and a Tilt Table Test, I had my answer of Dysautonomia.
Dysautonomia is a malfunction of the Autonomic Nervous System, the same place where the fight-flight-freeze reaction takes place. The Autonomic Nervous System controls things like digestion, heart rate, blood pressure, and more. Basically, all of the body functions that we don’t think of doing ourselves, but ones that our body just automatically does. I experienced constant lightheadedness, at times even my vision would black out, and an increase in my heart rate caused simply from standing up. My heart beat would jump from a resting of around 70, to the 150’s when I would just sit up in the morning. This occurred at any time of the day, but was significantly worse in the mornings. I consistently had low blood pressure, and was so fatigued all the time that for a while, I needed to nap every day. I also experienced constant pain. Ultimately, I learned that Dysautonomia affects your entire body and it is such a drag. The best part? I look completely normal and healthy, so it’s hard for others to understand that I’m actually chronically ill.
I was officially diagnosed less than a month before I went away for grad school. So the timing? Not great. I was figuring things out and putting them together so I would be able to survive in the city when my body was constantly fighting me. With this I was learning to adapt my life and love of being a musician, to a body that felt like it was constantly crumbling.
So where did this leave me as a musician?
While having a chronic illness obviously impacts my daily life, I also had to figure out how to make things work for me as a musician. My biggest hurdle was learning to perform well again. I struggled with this for a while. Remember that reaction that most people have to performance anxiety? Mine was made 10 times worse because of my already faulty Autonomic Nervous System. It was the lack of being able to concentrate or remember things. It was a constantly racing heart beat that wouldn’t let up, and it was the feeling of passing out after playing too long. So what did I do?
Honestly, there was a part of this that I just had to ride out and wait for my treatment plan to kick in. For the rest, I did everything I could to move forward. I packed little bags which I brought everywhere with me as a part of my “Just in case of emergency” plan. They contained disposable heating pads, salty snacks, Tylenol, migraine meds, anti-nausea meds, chapstick, and more. I made sure I always had water on me, or gatorade to help with electrolytes. I was lucky I lived super close to the music school. That way if I need to go back to my room and rest, it was easy to do.
I had my days early in the beginning when I was either too exhausted or felt too sick to practice. There were obviously missed days in the practice room, but over time, that’s gotten so much better. I typically take one day a week off of my horn now and save it for a time when I feel like I really don’t have the time or energy to get something productive done. Again, DAYS OFF ARE OKAY! Take what you need because beating yourself into the ground helps no one.
A lot of what I know now about performance anxiety, trauma, and artistic development I learned because I needed to adapt to my new situation. Being a performing artist with a chronic illness is NOT easy. It’s unpredictable, taxing, and just hard. Being a performing artist can be an unpredictable job. We talk about always being “on” and being able to adjust to any different setting or situation and working with different people. It’s about being versatile. But ultimately being a musician with a chronic illness is also about being versatile. I never know which symptom will arise and I cannot predict the work that will come my way, but the takeaway is that I will figure it out. I don’t let my illness get in the way of what I love to do and I also don’t let it overwhelm me. I take what I need when I need it. I’m vigorous about putting breaks in my schedule so I make sure I have the physical and mental capacity to keep going for the rest of the day. I make sure I’m prepared, not only with my pencil and music at the ready, but to deal with any symptoms that may come my way. It’s about adapting to each day of my life.
Something I always keep in the back of my mind is to never make excuses for myself. I see people constantly being like, “oh I was late because xyz”, or “I couldn’t record my excerpts for this project because xyz”. Frankly, I could make a million excuses about how I didn’t do things, or why I didn’t do things because of my chronic illness, but I don’t. I could make excuses about how I’m still working on something and that’s why something else sounds bad, but I don’t. “Excuses are the nails used to build the house of failure”. Yes, it might be a blunt saying, but the more we make excuses for ourselves, the more we allow them to build up and think it’s acceptable for us to get away with stuff. If you want to be successful, you have to be motivated by your future, your goals, that successful life you want. What will stop you from getting there? Don't sell teachers, directors, etc. constant excuses, because the truth is they don’t care. The truth is people aren’t going to treat me differently because I have a chronic illness, and nor do I want them to. I am held responsible for being on time and prepared. I don’t make excuses. I also don’t show up unprepared or late. But if you want to be successful, don’t make excuses for yourself. Hold yourself to a higher standard than that.
So what’s it like to be a Performing Artist with a chronic illness? Different, hard, exhausting, exciting, inspiring and everything in between. It requires a lot of careful attention to your body and mind. It requires adaptation to certain environments and scenarios. Once you figure it out, it just becomes a routine. You know what you need to do in case something unexpected arises. You know which precautions to take and you make sure you’re prepared for any situation. Now surely, it takes a while to get to this point. Things can change at the drop of a hat. Conditions can get worse, or better; they surely fluctuate a lot. Nothing is impossible. The same things can be achieved, you just may have a different process of getting t
here, and that’s completely okay! Take the path which works for you and go for it. This doesn’t make us weaker, but actually just stronger than ever.
Stay tuned for more entries coming your way every Friday at 12pm EST! Questions, comments, advice? Contact me at firstname.lastname@example.org or on instagram @mindoverpractice.
For now, have a productive week of positive practicing!