Posted by on Feb 17, 2014 in Blog |

I’m sick, why don’t they let me sleep?

When 15-year-old Morgan Gleason said, “I’m sick, why don’t they let me sleep?” her mom, Amy turned on her IPhone video and started recording.

What’s so unusual about a 15-year-old complaining about not getting enough sleep? The recording occurred in the hospital.  Sick with aseptic meningitis, which Morgan got from her treatments for a rare form of systemic autoimmune disease called Juvenile Dermatomyositis (JDM), Morgan’s statement resonates with many patients.

To understand Morgan’s story, one has to understand JDM.  JDM has no cure and is treated with chemotherapy, corticosteroids and immunosuppressants–medications that have severe side effects.   The course of the disease is unpredictable: some children go into remission while others can lose their ability to walk, experience other debilitation, including pain and may even die from this disease.

Communication and Being a Smart Patient

Being a smart patient, an empowered patient, means speaking up and communicating.  In her first video, Morgan gave voice to a systemic problem in the hospital setting that requires organizational and cultural change.

Fast forward the video to another important comment:  “It really annoys me to when they ignore you and they talk to your parents…I am the patient…I need to be heard…if you leave the room to protect me…it doesn’t work…I want to know what your going to do with me…if you want to poke me with a freaking needle, tell me.”

Again, Morgan notes an issue with communication.

This one is tricky because parents make care decisions, however her parents and physicians need to discuss with her what is happening and get her input.

So why is this video making a splash on social media? Because in less than two minutes, sick (literally) and tired, she describes what needs to change: communication, empowerment and “being heard.”

Morgan’s message resonates strongly with us and we encourage our readers to continue to learn from Morgan’s experiences through her new blog, and to share them with healthcare providers.