5th January 2021

Vinoj is an engineer by day and a spoken word and hip-hop artist by night. He was diagnosed with Addison’s Disease in September 2019 after experiencing an adrenal crisis and nearly a year of battling with its symptoms. In 2020 he released “Temple to Castle” - a song written about his journey with Addison's. Here Vinoj shares more about the song and his experiences with Addison's disease.

What’s Happening to Me? (The Symptoms)

I can’t exactly pinpoint when the symptoms started, but it wasn't until early 2019 when my family and friends started to notice them. It started with my skin darkening more than usual during the summer, but I kept telling myself it’s just a stronger tan since I spent more time outside. Then I wasn't eating as much as I usually do (I’m a huge foodie, so this became concerning) and I became exhausted very easily. It got to the point where doing simple activities like brushing my teeth and drying myself after a shower would leave me sweating.

Then came the stomach pain and nausea. The abdominal pain would flare up spontaneously, and started to affect my daily life. As an engineer by day and a spoken word and hip-hop artist by night, I was constantly on the go, and it got to the point where I was downing shots of espresso to keep my energy up and throwing up after I got off the stage from performing. I also found myself opting for sleep instead of performing after work since I felt so drained.

I had visited my doctor when each symptom started, but originally, they weren’t able to piece together the symptoms as part of a bigger illness. After several hospital visits and being told it's just food poisoning, I found myself back in the hospital feeling faint and having lost 20 pounds in the span of 2 months. Eventually, I was admitted and discovered a few days later that I had primary adrenal insufficiency this whole time.

Photo credit: Jungle Flower.

Vinoj: "This photo was taken to represent the frustration and pain of having to face drastic changes in my lifestyle when I got diagnosed."

Adapting to a New Lifestyle (Post-Diagnosis)

Looking back, I am very grateful for my doctor, my girlfriend, and the endocrinologist for putting all the symptoms together. I read up on experiences from others with Addison's that have been misdiagnosed for years before finally getting the right treatment. Discovering that I now require a lifelong treatment to compensate for what my body cannot produce anymore really shook up my routine and outlook on life.

I never thought I would end up being reliant on pills for the rest of my life, especially not at 26, so mentally I was quite resistant to this idea when I was first diagnosed. With this strict schedule that changed up my daily routine, understanding that I may never fully become my "normal" self again, and knowing the potential side effects of these meds, I closed myself off from the world as I navigated through this drastic change. I felt that I couldn’t be as productive as I used to be, couldn’t do any late-night performances as I need to maintain my medication schedule, and had to accept a slower pace in life.

A Song Was Born

As a spoken word and hip-hop artist, I write for myself first before writing for others, so initially I channeled all the frustration from the past year and everything I’ve learned into a song titled “Temple to Castle”. I chose to write the intro verse from the point of view of Addison’s Disease, as if it was a living entity competing with other illnesses trying to garner attention from humans. The following verses and choruses then turn into a warrior anthem-style expression of how I want to keep pushing through the obstacles that Addison’s gives me. This song doubles as an energetic workout song that I can use to rebuild my physical health with the right treatment and a song to raise awareness about Addison's Disease.

"As it is quite rare for someone with Addison's to connect with another person with it, I released this song in the hope that it reaches the ears of others who can resonate with me and my journey."

With COVID coming into the picture and preventing me from going outside, I chose to focus on myself more to understand how my body and medications work, and it took a lot of listening to become more aware of what my body needs. I now know when to slow down and give myself some rest and I know when I may need an extra half-pill if I am going to be having an extra stressful day. Yes, there are some days where I feel the effects of this disease weigh me down and make me feel unmotivated, but I realize this comes and goes and is a part of my life now. I learned that fighting this illness does not serve me anymore and I’m choosing to co-operate with my body's needs instead as the first step to living my best authentic life.

Author: Vinoj Suthakaran.

Photo credit: Anil Hanasoge.

To hear more Voice of Silence music follow Vinoj on Instagram, Facebook and visit www.voiceofsilencemusic.com

Addison's disease can strike at any age. Check out the young persons section of our website for more resources to support you.

Do you have a story about Addison's to help or encourage others? Whatever your story or experience we would be delighted to hear from you. Tell us your story.