Welcome, fellow spoonies!
My name is Jordan and I’ll be your host for this blog. I’m excited to share my journey with you and connect with others. Let’s get into the backstory and tell you a little bit about why we’re here.
I’m chronically ill. I always have been and always will be. I have a few different diagnoses but we will go one by one. Firstly, I have Ehlers-Danlos Syndrome. Mine is hypermobility type and passed on through genetics. I was born with this one but it took a long time to get diagnosed. What is EDS, you might ask? Put simply, my body doesn’t produce collagen properly. It sounds simple, but it affects more than you might think. It’s characterized by loose joints that sublux or dislocate easily, smooth velvety skin, GI problems, eye problems, easy bruising and stretch marks, chronic pain, and many others. Collagen is in every cell of your body, so every cell of the body is affected by EDS. I recommend checking out http://www.ehlers-danlos.com for more information on the various types.
My second chronic issue is in the mental illness category. I have Obsessive Compulsive Disorder. I was diagnosed when I was 3 or 4 years old and went through CBT at a children’s hospital and have gone through various therapy regimes throughout my life as well. To go along with OCD, I formerly struggled with self harm issues and have/still do struggle with an eating disorder.
Now that we’ve covered the major players in what makes me a spoonie, let’s share some fun facts. I’m an actor, producer, writer, and director in the independent film industry. I work in the medical field and as a photographer/videographer. I enjoy painting and making things. I have three dogs (Zeus, Hera, and Oliver) and two cats (Pippa and Maemae). I also have a husband named Matt. I am very close to my parents and my brother as well. My hobby of choice is training in aerial circus acrobatics.
I want this blog to act as a journal for myself and source of support and community for others like me. I want to be relatable to the chronic and/or invisible illness community, no matter the diagnosis the reader bears. I want to give insight to the friends or family of someone who may be in a similar spot and are unsure of how to support them. Most importantly, I want to others to know they’re not alone.