my year learning how to sing with chronic illness

This last year, in particular, I have worked my ass off to get my voice to a place where I can sing consistently and confidently at a high level. If you are not familiar with my story here’s the condensed version:

I have spent the past decade rebuilding my voice over and over again after 2 miscarriages, 1 rough pregnancy with a rough delivery, long Covid, hiatal hernia/esophageal surgery (where they cut and fused my diaphragm back together), vocal surgery to fix nodules and paralysis caused by Autoimmune Disease and a whole host of symptoms caused by Autoimmune Disease and Fibromyalgia. These symptoms have been plaguing me for probably 20 years but I only first received a formal diagnoses 3 years ago - first with the Fibro then gradually, test by test, we added Hashimoto’s, Complex Dysautonomia (POTS+), IBS, Complex Migraines, Alopecia, Psoriasis (we think), Thyroiditis (including non-benign nodules that may or may not be malignant- we are monitoring), Mixed Connective Tissue Disease, Endometriosis, Anxiety and OCD (no active Depression for years but formerly diagnosed).

Sooo. There were years where I was trying to build a technique without realizing I had this laundry list of things happening in my body. And, by the way, if you think the list of disorders is long you can’t even imagine the list of symptoms that accompany them. Fibro alone has over 100 potential symptoms affecting multiple systems of the body. Overlapping those with the others PLUS the fact that they are all dynamic disorders (can change or present differently from day to day) is a LOT.

You can image the difficulty and frustration of trying to do something as complex and demanding as building an operatic technique without knowing that all this is happening in your body. (Non-singer friends…opera singers are commonly referred to as the olympians of singing. It is very athletic and requires coordination and focus out the wazoo)! Now, factoring in the other things I mentioned above- Covid, miscarriages, etc.-I was always feeling like I was taking a few steps forward and then 100 back. I won’t even fully address the fact that this was happening in my late 20s/30s and I was very aware of the fact that I was soon going to age out of the programs and competitions that would have led me down a traditional career path (Jennifer Rowley just had a great post about this topic).

Fast forward to now and the point of this post. Getting these diagnoses has been so empowering and freeing. It’s hard to understand, perhaps, why receiving news that you are formally and permanently disabled would be freeing. (We could talk about what most people assume that label means as opposed to what it means from a medical or legal perspective, but that would be a much longer post. Suffice it to say it does NOT mean that I can’t do my job).

For me, pre-diagnoses I had been fighting a battle with no weapons- no knowledge, or very little knowledge, of what I was fighting and I certainly didn’t know how it was affecting my voice.

So I ended up just fighting myself. In vocal terms that translated to me pushing, demanding, forcing, tensing, over analyzing all in an effort to combat the muscle tension, fatigue, dizziness, alignment issues, etc. I knew it was wrong and that my voice was limited because of it but I didn’t know how to fix it despite understanding, pedagogically, what needed to happen. My body wouldn’t do it and eventually my brain stopped wanting to do anything that was less than what I was capable of. It was the most frustrating thing I’ve ever had to go through (and I’m a parent of a toddler and teenager). Separately, I knew my body, mind, and voice very well. But I couldn’t figure out how to make them all work together in a way that allowed me to sing freely. I needed the answers that came from the diagnoses. I needed to explore what it meant, for me, to be disabled and what that looks like for my body and my voice.

I made this condensed list of everything I discovered, worked on, or tweaked, over the last 12+ months to finally get to a point where I have a solid technique (always a work in progress) and a voice that is far closer to what I knew it always could be. I now have the knowledge and understanding to confidently say that my instrument is fully capable of meeting the demands of an opera singer but just needs a little extra attention and time each day to get there. What I love is that what I do as a singer with chronic illness is not very different from what I know many of my able bodied colleagues do daily. My version is just amped up a bit and there is way less room for error because the consequences of my body not being “ready to go” or singing with poor technique is more severe and the negative effects are longer lasting. Other than that there isn’t much difference I’ve noticed as far as what “a day in the life of a singer” looks like but that is only possible because of a TON of hard work and TON of research all with doctor (scope) supervision and regular work with my voice teacher. So, although I hope that this list can be helpful in some capacity, it is certainly not something I want anyone to follow blindly or think it will be a quick fix to a vocal issue.

Side notes:

1. Singers and voice teachers please feel free to reach out if you want to talk more in detail about chronic illness and its effect on the voice. My non-profit organization, The Chronicled Voice, was created for this very purpose!

2. I had a family member recently voice confusion about my inability to sing. They were like, “You sound great in your videos just go for it!” They didn’t understand the distinction between decent singing and singing that is going to be sustainable on stage…over an orchestra…without mics. Understanding what was going on my body gave me permission to take space to finally build on my technique.  FWIW-The current videos on my website and YouTube were made almost 2 years ago pre-full diagnoses while I was recovering from the hernia surgery. I also (unknowingly) had partial paralysis in my left fold and the autoimmune nodules on my right. If your ear is trained you can hear and see some of the issues I was having. (I am not saying this in defense of the recordings but rather because I think they can be really helpful teaching tools).

3. If you are waiting for the video I promised regarding Fibro and weird sensations in the voice…it is coming!