The zebra has become a recognized symbol for rare disease, but to me does not fully capture the reality of all that patients, caregivers and families navigate everyday and endure.

As the mother of three kids living with medical complexity, my family (like many) spent an inordinate amount of time in doctors’ appointments and hospitals, in meeting after meeting with teachers and schools, driving to therapies, and drowning daily in emails, phone calls, messages and insurance issues all while trying to keep my family afloat. It’s a reality that many in the chronic community can relate to. Some days even a simple trip to the grocery store would break me.  

I dreaded running into people who would ask how my kids were doing because it really wasn’t going well. I didn’t have positive updates. I didn’t want to talk or get emotional, or even worse, bring the conversation down. To avoid the questions,  I started responding, “Just Ducky!” and then I’d transition the conversation back to the questioner. 

It was my own secret code. If you have ever stopped to watch a duck on the water, their path is smooth, they float with grace.  But in reality, their little webbed feet are kicking as hard as they can just to stay afloat. 

This is often the reality for caregivers and people living with complex illnesses. Just because something becomes your norm does not necessarily mean that it is easy.  We may look okay on the outside, but internally we may be barely staying afloat. The truth is that there is simply not enough support for caregivers or people who live with rare, chronic or complex illnesses and disabilities. Due to the constraints and financial pressures of present day healthcare, there is also not enough support for the doctors and healthcare providers who care for us either.  We are all kicking like crazy and just trying to move forward. 

It’s time to start acknowledging some of the more complicated problems below the waterline in medicine that impact clincial care, causing added stress on patients and providers.  Elevate Rare is committed to bringing patients, caregivers, healthcare providers and other stakeholders together to work on some of the more difficult challenges facing rare, and medically complex care with a goal of finding smoother waters for all sides.

Won’t you join us?