Parents As Rare: Chronically Simple & Simply Unbreakable

PARENTS AS RARE - EPISODE 039
Chronically Simple & Simply Unbreakable - Kristy Dickinson

Kristy Dickinson is a wife and mother of three, navigating life with multiple rare diseases. She's the founder of Chronically Simple, a digital health app that empowers patients and allows them to take control over their healthcare. She writes a blog and also co-hosts a podcast called Simply Unbreakable.

EPISODE HIGHLIGHTS

Can you share a bit about yourself?

I am a rare disease patient with Ehlers-Danlos SyndromeIt is an inherited condition that affects the connective tissue of the body. Connective tissues are responsible for structuring and supporting the skin, blood vessels, bones and organs. Connective tis (EDS), a genetic connective tissue disorder. I also have comorbidities that accompany EDS including Mast Cell ActivationA condition associated with allergy cells and are responsible for immediate allergic reactions. Syndrome (MCAS), Medullary Sponge Kidney (MSK), Ankylosing spondylitisAn inflammatory disease that can cause some of the bones in the spine to fuse, over time. (AS), and an esophageal disorder that is still being diagnosed. I have been married to my husband Simon for over 20 years and I'm a mother to three children who are 9, 12 and 14 years old.

What was your diagnosis journey like as it relates to your family?

My health deteriorated with each pregnancy. When I was going through it, the doctors didn't know what was wrong. When I was struggling without a diagnosis and then after I was first diagnosed, I had to adjust the narrative in my head around my hopes and dreams, what I thought my family would be like, how I would parent and show up as a wife. I went through a period of mourning and struggled with it.

How are you using your own childhood experience to support your kids through their experience?

My mom was an incredibly strong and stubborn woman and my dad often shares that we are very similar, which I take as a compliment. I think you have to be stubborn to live with chronic illness every day. My parents worked really hard to give my sister and I as normal a childhood as possible. I never wanted my kids to have fear of my prognosis or feel like their time with me is limited. So I fight, I work every day to be present with them and keep my focus and priorities where they should be.

How do you help your kids cope?

I'm very honest with them. I struggle to know how much information I should give them and how to have those conversations because I don't want them to worry. We have very honest conversations about how they feel. They also each have a therapist they can talk to as they want.