Life with a chronic illness is tough. Anyone who has one can tell you that. It impacts just about everything in your life. My chronic illness is fibromyalgia. I am also a musician. I play the flute and sing alto. I am currently studying music education and this diagnosis has set me behind because I am unable to keep up with all of what is required of me to complete my degree on time. Fortunately, I go to a school where I have understanding professors who work with me and want me to succeed, but it’s tough being a musician who has to say no to opportunities just so she can make it through the requirements of classes.
I used to play several instruments and want to learn more, but my arms, hands, shoulders, neck, head, and spine take the brunt of my fibro. My lower half takes a toll and can make sleeping horrendous, but isn’t necessary for the instruments I play. I auditioned on my flute and am considered a flute major as well so it is best to finish out on my primary instrument. When fibromyalgia first hit me, it knocked me down. Any musician knows the feeling when you suddenly are not able to play. It’s your life. I felt like my body let me down and desperately wanted to play. It only affected my right arm at first and after going through physical therapy for the diagnosis of posterior interosseous nerve syndrome of the elbow (essentially a trapped nerve), the pain went into my left arm, which then travelled down to my hips, thighs, knees, calves, and feet. Dizzy spells and blurred vision shortly followed. It seemed like I was falling apart and no doctor knew what was going on.
My professors stuck it out with me and did their best to keep my hopes up. I was out of commission and found refuge in singing because that seemed to be the only musical thing I could do. I already had to drop my flute and piano lessons due to doctor’s orders to not play until they could figure out what is wrong. Hearing a doctor tell me to stop playing felt like a stab to the heart. My friends began to stop asking how I was doing and I could feel their heads silently shaking when I said I had another doctor’s appointment or another procedure.
Eventually, I got the diagnosis. Fibromyalgia. I didn’t celebrate. When I heard the word come from my neurologist, I wanted to cry. I didn’t, but I really wanted to. I was thankful to have a name, but I was disappointed. I knew what it was. I read up on everything to figure out what I could have as I went through different tests and doctors, all while the dreaded f-word kept popping up. I had a feeling, but didn’t want it to be true. It is incurable and meant playing the flute was going to be harder. It meant my dreams and goals were going to be harder to achieve and that I would probably have to say goodbye to a few. It meant a lifetime of pain and fatigue.
I told my professors and I got different responses. Some good and some bad, but they all work with me. I ended up finding out that one of them struggles with fibromyalgia as well and I look to her as I work through finding out what works for me. My friends had mixed reactions. I started to realize shortly after my diagnosis how frustrating it can be to have an invisible illness because it would be easier to show everyone how I feel instead of tell. One of these days, I will have it down.
Fibromyalgia doesn’t mean that everything is impossible. It means that the straight road you are on has taken a detour and you will be getting to your destination in a longer time span and different way. I have taken plenty of detours and will continue to take detours as I work to achieve my dream of becoming a music teacher and composer. I will continue to work with my flute and get better. I unfortunately will not be able to play professionally like James Galway, but I will hopefully be able to stay stable in my playing and not decrease in my level.
With being diagnosed with this illness, my view on life and music has changed. A new world has been opened to me and I have gained a new perspective in life. In the music world, I do things a little bit differently to help me out and hopefully other musicians. To give an example, I try to conduct with using my arms as little as possible because I am unable to wave my arms for the required amount for a concert or rehearsal. My arms have the tendency to give out on me if I use them too much, which is frustrating when playing the flute. But, for conducting, I have learned to keep the beat somewhere else so my musicians know the tempo and can count for themselves. I am still learning more about this and need to work more with it, but it has been interesting.
I write this because when I was first diagnosed with fibromyalgia, which honestly wasn’t too long ago, I looked desperately on the internet for other musicians with this and had the hardest time finding anything. I felt helpless because I had no idea what this meant for me and my future. I hope this finds someone and helps them relate because fibromyalgia doesn’t have to stop you from achieving your dreams. It means that you will have to do things differently so you can achieve what you want with this difficult disease.