“Hi, I’m Lydia. I am 17 years old. And I am chronically ill and disabled.
Growing up, I always got sick. I always complained of body aches and had poor balance. I couldn’t walk until I was two and had to wear ankle braces. Then, when I was 15, I started having pain in my right shoulder. In October 2020, I lifted a table that amplified my shoulder pain, and it became excruciatingly painful and hard to move. I developed a large lump on my shoulder, which led doctors to believe that I had torn my rotator cuff, so I got an MRI, which showed nothing. Then the pain got so bad that I couldn’t move my right arm when I started Physical therapy. The physical therapist brought up the possibility of me having CRPS. But the doctor hadn’t heard of it so she refused to see if matched the criteria for that diagnosis.
In December 2020 I developed a high fever and was showing signs of what we originally thought was Covid. After experiencing some concerning symptoms I was brought to the Children’s Hospital via ambulance. The first doctor I saw that night thought for sure it was Covid so they tested me seven times all of which came back negative. Then he thought I was having a stroke due to a lack of facial movement on my left side. But the CT scan came back clear, the second doctor wanted to do a spinal tap. The spinal tap went wrong and they had to do it three times after it was over I realized I couldn’t feel my legs. The doctor told me that it was only temporary. ( I still can’t feel my legs ). After more inconclusive tests they told me it was just anxiety and then I was sent home. I am now a part of Gillette’s Specialty Care and since then I have been diagnosed With Ehlers Danlos Syndrome, CRPS, POTS, Neuropathic Pain Disorder, and FND. The Ehlers Danlos explains the symptoms I had growing up and the rest explains all the symptoms I’ve developed in the last few years. I’ve started sharing my story to help raise awareness and advocate for people like me.”
