Hi! I’m Olivia and I’m 22-years-old. A pain specialist, in the spring of 2020, first identified that I had most of the symptoms of hypermobile Ehlers-Danlos syndrome (hEDS) when I was 17.
I had struggled with pain my whole life in one way or another, and up until then I had been diagnosed with several different conditions because my doctors had just been looking at one part of my body or another.
When I was a teen my pain became a lot worse, especially in my hands, as well as my mental health. By 16 I was told I had platefemoral knee syndrome, myofascial pain syndrome, flat feet, and was pigeon-toed. As the pain got worse, I expressed that more of my joints were subluxing and it was painful. I was just told repeatedly that it was fibromyalgia, prescribed antidepressants, and I felt like I was losing my mind. At one point I was even diagnosed as a hypochondriac.
By 18, my doctors sat me down and told me that I would need to get on disability just because my pain was so extreme, and my EDS, already by 18, had advanced so severely that I would not be able to work and maintain a quality of life. It’s been a really hard five years, but this July I welcomed a beautiful baby boy with my partner, who is incredibly supportive of my disability and helps a lot. I would not have believed this to be possible for me to be not in excruciating pain every day five years ago.
Through trial and error with medication and different therapies, as well as a lot of specialized physiotherapy, I am very grateful to be where I am today and thankfully in a lot less pain. EDS doesn’t mean that things can’t get better, or that you’ll always be as much pain as you are at your worst. I’m very grateful to my medical team, my family and friends and most of all my little boy who gives me reason every day to keep pushing forward even when it’s hard.
