ENERGY IN ACTION – EPISODE 060
Meet the Bartles
Jake and Cami Bartle have been married for three years and they join us to share their rare disease experience and how the diagnosis has affected them as a young couple.
Cami, what is it like to be married to someone with a rare disease?
We didn’t know that Jake had mitochondrial disease until 5 months after we were married. He had a seizure, was in the hospital and he received a diagnosis. Having a sudden diagnosis was shocking and made me realize nothing is guaranteed. At the beginning, the experience was isolating, but we’ve found community through the United Mitochondrial Disease Foundation, and I’ve been able to connect with more caregivers.
Jake, what do you do for a living?
I went to school and got my Masters degree in elementary education and I’ll be teaching 6th grade social studies. After my diagnosis, I looked up life expectancy and it helped me to reflect and re-evaluate what I wanted to do with my life.
Cami, what do you do for a living?
I work in marketing and I’m thankful to work from home so I can better support Jake. I’m also thankful for a manager and team that are understanding when I have to be at doctors appointments or away from work to be more available to Jake.
As a young couple, how do you structure work/life balance and make every day count?
We try to have dinner together every night and watch tv together. We’re intentional about not being on our phones when we’re together and we take date night very seriously. We’re intentional about the time we have together and we make sure to create time for each other.
How did you cope with receiving a diagnosis during the pandemic with limited resources available to you?
We both did individual therapy and we did some work together to get unstuck. Going through the diagnosis wasn’t easy for either of us and we had to process through it individually for differing reasons. It took time to come to terms with the diagnosis and what it meant for our future. We’re always working on controlling what we can and letting go of what we can’t.
LINKS & RESOURCES MENTIONED
CONNECT WITH MITOACTION
Meet the Bartles