Somewhere between rare disease, chronic conditions, complex medical, disability and invisible illness is the sobering realization that no matter how many people might love and care about you – the journey of living this life can be isolating, uncertain and overwhelming. 

As the mother of three kids living with medical complexity, my family spent a ridiculous amount of time in doctors’ appointments and hospitals, in meeting after meeting with teachers and schools. Don’t even get me started on the insane level of emails, phone calls, messages and insurance forms. Far too many people endure this unfortunate reality. But, with only 24 hours in a day, they must also maintain employment and activities of daily living in whatever form that takes. 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!” 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 can often be 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. 

Living rare often means having to kick like crazy just to stay afloat. The zebra duck is the perfect mascot for ElevateRare because we understand those challenges that are under the waterline.  We are committed to helping patients, caregivers and healthcare providers with some of the more difficult challenges facing rare, and medically complex care with a goal of finding smoother waters.

Won’t you join us?