Published: 27/04/2021

You are valid without a diagnosis

My name is Lena Nakaiya, and I’ve been Chronically ill and Disabled for ten years.

It started when I was eight. My parents started noticing that I was in pain very often, and very fatigued. I was always going to the doctor, ER, or school nurse. But every time they found nothing.

Chronic illness runs on my mom’s side but had never affected them this early on in their life. I struggled for years because I knew something was wrong. It was my word against the Doctors. And I was just a kid. My parents tried to understand but they really didn’t know what to do.

I was a kid, and I didn’t know how to explain that every joint in my body ached. Or that my bones hurt. Or that I felt tired from the simplest activities. I couldn’t explain how I was so flexible, yet was unable to run or do pushups. Not to mention all the other symptoms I was dealing with from other chronic illnesses.

For almost six and a half years, I was shut down, ignored, and gaslighted. I was told it was all in my head, that I was an attention seeker, that I had no pain tolerance. When in reality, I was in chronic pain every day of my life. It took a serious toll on me mentally.

I think my parents finally understood how serious it was when I gave myself a 3rd-degree sports injury by climbing out of my bunkbed. I had to get surgery, be in a wheelchair, and relearn how to walk.

I finally got diagnosed about three years ago. I was able to go to the state children’s hospital and get treated and diagnosed by specialists. I was overjoyed to finally have answers and confirmation of my experience. I had been living with a serious form of EDS that was affecting my heart and joints and blood flow! I had been chronically ill for my whole life, and no one knew except me.

Thanks to my EDS diagnosis, I was able to get several other diagnoses to explain my other symptoms as well. My relationship with my parents definitely improved. I’m happy to say now that through therapy and treatment I’m in a much better space mentally and emotionally. And all I want to do now is help others going through similar situations to understand that they are valid even without a diagnosis. You are valid, you are loved, and you are valued. I want to share my story, spread love, and support others!

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