We were sitting in the parking lot outside another doctor’s office, and my daughter didn’t want to go in.
I couldn’t blame her. By then, she’d seen more doctors than most people see in a lifetime, and so many of those appointments had ended the same way. Exercise more. Lose weight. Get better sleep. Whatever was wrong with her, it was something she was doing, and if she just tried harder, she’d feel better. Except she’d been trying for years, and she wasn’t getting better.
She had reached the point where she dreaded going to the doctor. She wouldn’t sleep the night before an appointment, and sometimes getting her there was a battle. On this particular day, we’d made it as far as the parking lot. I sat with her, knowing she needed help and understanding why she didn’t want to walk through another office door.
I was her mother. I was supposed to be able to help her. I could make the appointments and drive her wherever we needed to go. What I couldn’t do was make someone listen.
It hadn’t always been like this. Before she became ill, my daughter was a straight-A student, a cheerleader, and a kid with a busy social life. She loved school, had lots of friends, and went to parties. She was smart as a whip, curious about everything, and never particularly shy about expressing an opinion. Trust me, that last part hasn’t changed.
When the stomach pain began interfering with school, we started looking for answers. We saw specialist after specialist. We heard anxiety, weight, prediabetes, PCOS. There were tests and medications, but nothing seemed to explain everything that was happening to her. Eventually, a gastroenterologist diagnosed her with gastric ulcers. She was thirteen.
I remember feeling relieved. Finally, something concrete. Something we could treat. We arranged hospital-homebound education so she could follow a medication schedule that didn’t work around a regular school day. I thought that once the ulcers healed, we could start putting her life back together.
And the ulcers did heal. But my daughter was still in pain. There were days she couldn’t get out of bed. School became something other children attended. Her friends continued going to parties, spending time together, and making memories without her. At first, they called. Eventually, the calls became less frequent, until even her two best friends stopped calling.
I watched all of this happen while we continued looking for answers. I could take her to another appointment, but I couldn’t give her back the ordinary experiences she was missing. I couldn’t make her friends remember to call. And I couldn’t promise her that the next doctor would know what was wrong.
My daughter, however, wasn’t about to stop looking. She often goes down the rabbit hole of research, just like me. It’s something that I passed down to her. When something interests her, or when she wants to understand something, she researches it until she’s satisfied. She reads everything she can find, follows the references, and keeps going until the pieces start making sense.
At some point, she began researching her symptoms herself. And eventually, she came to me and told me she thought she had Ehlers-Danlos syndrome.
I had no idea what Ehlers-Danlos syndrome was. I couldn’t tell her she was right, and I couldn’t tell her she was wrong. But I wasn’t going to discourage her from asking questions. We’d already spent years listening to explanations that hadn’t made her better. If she’d found something that seemed to fit, it was worth bringing to a doctor.
So we went looking for doctors who understood EDS. Or at least doctors we thought understood it.
And once again, we ran into the same dismissals. Exercise. Weight. Sleep. The explanations barely changed, even when the names on the office doors did.
What made those appointments especially hard was that my daughter wasn’t simply asking someone to figure out what was wrong. She was bringing them something she’d researched, something she believed might explain her symptoms, and asking them to consider it. And so often, they wouldn’t.
I watched her stop wanting to go to doctors at all. She had spent years being told that anxiety might explain her symptoms. Now she was anxious about seeing doctors, and I understood exactly why.
That was one of the hardest parts for me. I wanted her to keep going because I knew she needed help. But I also knew what another dismissive appointment might do to her. I was asking my daughter to trust a system that had given her very little reason to trust it.
I don’t know how many times I wished I could simply make someone understand what was happening to her. Not just the pain, but the loneliness, and waking up every morning not knowing how much she’d be able to do.
And through all of it, she kept insisting that there was something more going on. Eventually, we found a doctor who listened. The doctor who took her concerns seriously was also the one who diagnosed her with Ehlers-Danlos syndrome.
My daughter was relieved. And she was angry.
I was relieved, too. But I couldn’t stop thinking about all the appointments, all the explanations, and all those times she’d been made to feel that she simply wasn’t trying hard enough.
The diagnosis didn’t give her those years back. It didn’t restore the friendships or the school experiences she’d missed. And it didn’t erase what had happened in all those doctors’ offices.
She was right.
It just took years for anyone to say so.
