My experience with Mal de Debarquement Syndrome, a unique disorder with a variety of confounding symptoms, began in December 2012. I didn’t know what it was and kept getting misdiagnosed.
It wasn’t until August of 2014 that I received my diagnosis. The reason for me being misdiagnosed was because I had not been on a cruise or boat (the most common trigger of MdDS), so even though my symptoms matched that of MdDS, the doctors dismissed it because they had as little knowledge of the illness as I did.
Mal de Debarquement has taken away so many joys in my life. I was an avid hiker and enjoyed Zumba, but with symptoms at the higher levels almost every day, it is not possible for me to exercise like I used to because some days simply walking through my house takes all the energy and balancing skills that I can muster. Simple things like showering, washing my hands, brushing my teeth, putting on make up or walking to the next room can feel akin to running a marathon and leave me breathless and with heightened symptoms.
MdDS has been the most challenging thing for me both physically and emotionally, and it has stripped me of most of my independence as well as my self-esteem. It has completely changed my life and the life of my children, who are also effected by this change in my health. Because I was dismissed by many in the medical field, I feel it is key to spread awareness about this illness. I believe all doctors should be made aware of it and for those who are aware, they should understand that MdDS is not always caused by being on a cruise or a boat. That is one of the reasons why I was misdiagnosed so often. Knowledge is key, and without it, we will never unlock a cure.