“It’s just growing pains,” The doctors used to say about the pain. “It’ll go away on its own.”
“Its just being a teen,” They said about the dizziness. “You’ll get used to it.”
Ollie didn’t know they were wrong- not until he was about fifteen. His mother didn’t believe him so he never brought it up at the doctors. Not until he went to the ER one day, and the doctor there said the dizziness and symptoms that correlated with it could be POTs.
His mother took him to get tested, and he was diagnosed with it. The first step in a several-year journey.
Next was the pain. He was diagnosed with Fibromyalgia at first, but he knew that was wrong. Ollie fought for at least two years to get diagnosed with Hybermobile Ehlers Danlos Syndrome. In those years, he started using mobility aids.
At first it was just a cane, to help with stability. Kids started to call him ‘Grandpa’ at school. Then the cane wasn’t enough. He got a pair of forearm crutches, and those helped more. Kids stopped calling him Grandpa, but they started telling him they were going to kick his crutches while he was walking to see if he’d fall. He would, if they’d done it.
Ollie’s mother bought him a walker after that, but he was barely allowed to use it. He only used it at big events, or places he’d walk for a long time. He used the crutches daily. Kids thought he was faking needing them. The nurse at school knew him by name alone.
He got diagnosed with Functional Neurological Disorder a bit after the hEDS diagnosis, due to random leg paralysis and seizures with no explanation. The doctors had ruled out everything else.
Ollie knew the crutches, or even the walker, weren’t enough. He was getting worse. His legs always hurt, even just walking down the hallways at school. Around his house. Sitting down. Sometimes they’d stop working at night and the paralysis would last all day. Sometimes he’d have so many seizures in one day that he could barely think straight.
His mother didn’t like him calling them seizures, but that's what they were. Non-Epileptic Seizures. She got mad at him when he told people that's what they were.
Ollie told his doctors he wanted a wheelchair prescription, for a custom one. They said no. They said “It’d enable the problem” and “It would make it worse” and anything like that, just to make sure he knew they were against it.
He knew it’d help him. He barely left the house. When he did, he came home with extreme pain and fatigue, and that would be from an outing of less than two hours. He knew the wheelchair could give him more freedom to go places. But the doctors didn’t understand that.
He’d keep fighting, though.
Just like he’d done before.
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