Once upon a time, isn’t that how all good stories start? Once upon a time there was a young woman. She was full of life and although she had not had an easy life, she was happy. She worked three jobs and loved them all. Her work with kids was hard but rewarding.
Her other jobs were rewarding, but more for her. She made beautiful jewelry and helped staff a local craft store in town part time. The community knew her well, and she and her dog were pretty recognizable. She was in her element.
Her third job was with her church, as faith was important to her. She also had other things she did, sitting on community committees, volunteering to cook meals for seniors, and fostering both children and animals. She never stopped, and one day, it caught up with her.
She had had medical issues that no one could explain for years, growing up she was belittled, told it was her trying to get attention, that it was in her head. She remembered crying and being told it’s just growing pains. As a teen she would be in so much pain, she would beg for someone to cut her neck open to relieve the pressure, but as an adult, you would only see her grimace and she rarely cried in public. She was still sick, but her family told her she could do anything, live her life, and she just needed to push through whatever was happening. Even her doctors could not see anything wrong, so time after time she was told she was making it up and too sensitive.
Sensitive she was, but for other reasons. The young woman worked herself so hard, supporting not only herself but many around her, until one day, she couldn’t. She woke up one morning and could not move her legs, could barely move her arms, could barely make a sound. She didn’t show for work, and everyone was concerned but assumed maybe she had a migraine headache, because those were common for her. She didn’t open the store, but the owner figured something came up, she was responsible enough. Her parents were used to her not coming over except once or twice a week, so she wasn’t missed there. Friends assumed she just needed some space, so no one saw anything wrong.
Her dog, on the other hand, knew something was wrong. He was well trained and started barking. He barked for what seemed like hours until a neighbor called the police. When animal control got there, they had the police break down the door. At that point the young woman had not been able to move for what they estimated was close to 16 hours, and she was highly embarrassed yet thankful for the help. She was taken to the hospital, and in the hustle and bustle of moving her, she began to be able to function again. No one could understand the miracle of this, and again, after all tests were ran, she was told it was in her head.
Her doctor told her she needed psychiatric medication, because she was just fat and lazy. When she cried and said something was really wrong, he told her no, she needed therapy.
This is where she got lucky. Her therapist was a former nurse, and after hearing her story, the therapist looked at her and said, “something isn’t right, and I believe you.” Hope. The young woman felt hope and started seeing the therapist regularly.
The young woman, although full of hope, still continued to get weaker. There were days her legs barely would move; she would drop things regularly. She began to pass out on a regular basis, falling and hitting her head, dropping things. Sleep was her only friend, and she got so weak that she barely maintained a single job, let alone her normal three. It finally got to a point she was doing the minimum to get by.
. She was sleeping around 17-18 hours a day, and barely functioning. People began to worry, and one friend, studying to be a doctor, read something interesting, about a disorder called a Dysautonomia, or Postural Orthostatic Tachycardia (POTS). It fit. It fit the weird symptoms, the heartrate, the autoimmune, the passing out, the sleep. It fit and she called her friend excited with the discovery. The therapist was excited as well, and also felt this was a huge piece of the puzzle. The young woman excitedly went to her doctor, armed with knowledge and research, and presented what might be going on.
“You are having a psychotic break, you need medicated, and to loose weight,” was the response her doctor gave her. He stated he would not see her again unless he could medicate her. The young woman wouldn’t go down without a fight. She agreed to be zombified, if he would only write a letter of recommendation for her to go see a specialist to tell her it was POTS. The doctor finally agreed, telling his client he would write it and she would be let down, but she needed to find another primary care doctor.
The waitlist for this specialist was long. Over a year. The cost was phenomenal, out of reach. And the young woman was growing weaker by the day. But after baking, raising money, she got to the specialist.
She was hopeful, prepared with all her medical records, and yet cautious. No doctor had believed her so far, why would this person. As the doctor read through different test results, doctor and emergency department documentations, the room was silent. The doctor looked up at the young woman and said, “it’s not in your head. You have POTS, and I’m pretty sure you have something called Ehlers Danlos, but we need to get you in with a geneticist as soon as possible.”
Hope. There was hope and understanding and for the first time, the young woman didn’t feel like a failure. After another long wait for another specialist, it was confirmed that she had Ehlers Danlos For the first time there was more than hope, there was peace. But the fight had just begun. And this, well, this is her story.
