Hi, I’m Vanessa
Welcome to my chronic illness blog!
I am launching a new page focused on chronic illness and all that comes with it: invisibility, pain, and being misunderstood. I myself, suffer from a slew of connective tissue disorders and comorbidities. My main diagnosis is an extremely rare disease called Dercum’s disease; it causes benign tumors (lipomas,) which press on all my nerves, causing excruciating chronic pain. I also have Hypermobile Ehlers-Danlos Syndrome, and Mast Cell Activation Syndrome. Getting from my first symptoms to an actual medical diagnosis was a very long and painful process. To my dismay, I was often dismissed by the medical community and had to fight, tooth-and-nail, to get the help I needed. So I am here to share my journey and experience to help others, along with myself, find the validation and community we all need and crave as humans.
Questions:
Let me know if you have any more, and maybe I’ll make a whole page!
1. What were your first Dercum’s symptoms?
Lumps under my skin, ranging in size from a pea to a chicken breast; chronic fatigue; widespread pain, and at lipoma sites; constant fatigue; and brain frog.
3. How have friends and family responded to your illness?
Some have been supportive, while others have pretended my pain isn’t a daily reality and have grow tired of hearing about it. My mom is the most involved, and takes me to almost all my appointments and surgeries.
2. How long did it take you to get diagnosed?
I suffered from chronic pain flares for about six years, but it took around two years from the time I discovered my first lipomas to get properly diagnosed.
4. What are you most concerned about in the future?
Losing my mobility completely. As the years progress, I am forced to rely more and more on mobility aids, including a cane, walker, and probably soon, a wheelchair.