Below is a blog I wrote for a friend, on my journey with invisible illness!
Hey everyone! My name is Sarah Tsacogianis, I’m 22 years old and I’m from Boston, MA and I am an invisible illness warrior and spoonie. After living 18 years without being diagnosed with Celiac Disease, I have quite the story of going through health troubles. I also have been diagnosed with Polycystic Ovarian Syndrome (PCOS), Mast Cell Activation Syndrome (MCAS), and a tree nut allergy. I like to think of myself as someone who focuses on the positive despite my circumstances. I’m a huge believer in the ability to choose happiness, to choose to be positive, despite what you have stacked against you. As you hear my story, you may see that trend throughout; instead of focusing on the negative, the what could have been, I shift my focus on what can I do to better this circumstance; to keep my mind right, etc.
Back to more about my story… My entire life I was what doctors called a “mystery”, I was always sick without a cure, no diagnosis in site, and soon after 18 years I started to lose hope. I was oh so terrified of the fact that, what if the doctors finally find out whats wrong with me and it’s “too late”. It was a terrifying thoguht that would bring me to tears more times than I can count, wondering if I would suffer for the rest of my life. Although I remained hopeful, it was hard when doctors would dismiss my stomach pain, generalized weakness, horrible immune system by saying…
“Maybe you should go to an obese clinic?” “Losing weight would help.” “Maybe it’s alopecia.” “Maybe eating more iron will help.” “Wow, your immune system is terrible.”
As a young woman who was on average 150 pounds, wearing a size 8; I wasn’t unhealthy on the outside, but on the inside… that was a different story. I was anemic for 6 years, vitamin deficient in every vitamin, and doctors STILL didn’t take me serious until my outward appearance showed the signs of my internal trauma from years of being sick and tired, of being sick and tired. My hair was falling out rapidly, one summer I dropped 30 pounds, eating TWICE as much as I had been eating in the past, my already pale skin seemed translucent, everything was going wrong, and I didn’t know where to turn. This continued all the way through high school. Shortly after graduation I decided ENOUGH was ENOUGH. I was going to take matters into my own hands. That was when I turned 18 and called for a referral to a new primary doctor, and transferred out of pediatrics. I demanded a total panel of labs, and to be tested for celiac disease… as my doctors had CANCELED several in the past (including a celiac one). The only answer I got was…
“There is NO WAY you can have celiac disease, those who have that are skinny, and you’re overweight.”
Instead of walking out of another doctors office crying, I felt proud to have demanded them to take a better look! Clearly something has been off for years, and lets be real.. I am not here to bash doctors but you need to find those willing to listen! A week later I get the call…
“YOU have celiac disease.” *CLICK.* Just like that the nurse hung up, and a whole new world surrounded me, that consisted of reading labels, being “glutened” and living life somewhat normally again.
Of course, my story is much longer, almost 23 years long to be exact! I have been through the ringer health wise and decided to take matters into my own hands and help heal my body through health and fitness! As someone who struggles with chronic illness, I have had my doubts; and struggles just like anyone else… but one thing is for certain, living a healthy lifestyle is the ONLY thing that has helped myself and my symptoms. Eating real foods, all gluten free of course; has been a GAME CHANGER! Moving my body 5-6 days per week just to get my sweat on has been vital to managing my chronic pain; and focusing on getting my mind right. Daily personal development keeps me sane going in and out of doctors visits, through infusions, and just venturing through life itself! I’m so thankful of these tools, they’ve singlehandedly helped me into remission; and on this journey to healthy and happy!
Let’s be real we all go through “STUFF”, but what we do with that stuff matters; will you turn that mess into your message? Will you turn that stuff you’re “hiding” in the back of your closet, apart of your story? Will you turn that big lesson you learned in life, into an even bigger blessing? It all starts with YOU!
If you’d like to hear more about my story, feel free to checkout my website or follow me on social media! Thanks for reading my story <3
Facebook: Sarah Tsacogianis
Instagram: @SarahTsacog & @gourmetglutenfreefoodie