Living with a rare disease
In this episode Nikita Boston-Fisher and Kristy Dickinson speak about her journey from getting diagnosed with Ehlers-Danlos Syndrome to creating the Chronically Simple health record. They discuss the importance of cultivating trust between patients and doctors and how to advocate for yourself while still asking for help from others. Kristy Dickinson is a mother, an entrepreneur, a rare disease patient, and Chronically Simple’s founder. The company helps track appointments, medical records, medications, and more, using their secure, user-friendly subscription software. Listen to the episode here!
Healthcare is a Partnership
We can all imagine the frustration of finding the right specialist, telling your story over and over, reliving the trauma, or getting misdiagnosed. Kristy is all too familiar with this experience, so she took back her power as a patient and started to view healthcare as a partnership. Before, she believed that she was the one who was lucky to have her doctors on her care team. Now, Kristy also believes that her doctors are just as fortunate to have her as a patient.
Kristy knew she was educated, low-maintenance, curious, and constantly aware of her body’s condition, which would align with most specialists, but not everyone is as lucky. In some cases, people only have a few specialists to choose from, and more often than not, these patients would always do what the specialists want them to do, without question. Kristy values cultivating trust between a patients like herself and specialists. She advocates for patients to take an active role in their healthcare management. since, the best care comes when you feel like a trusted member of your care team.
Advocating for Yourself while Asking for Help
Most of the time, we want to perform well and be there for our loved ones, but we just cannot be some days. Kristy shares her experience managing to be a mother, an entrepreneur, and the founder of Chronically Simple, all while living with a rare disease. “A work in progress” is how she would describe it. Sometimes Kristy struggles with getting out of bed and feeling like a burden to her loved ones, but she also chooses to be happy and grateful every day for whatever is going to come. She tries to give herself grace, whenever she doesn’t achieve all she had hoped to in a day. She acknowledges that while. It may be challenging to ask for help from others, we have to learn how to do it, having a support system makes it easier for both our loved ones and ourselves.
About Kristy Dickinson:
Kristy is a mom to three kids, a wife to a first responder and an entrepreneur. She’s also a rare disease patient. When Kristy was diagnosed with Ehlers-Danlos Syndrome at 37, her life changed in an instant. When she went looking for a solution to manage all of the administrative tasks that accompany life with a chronic illness, nothing existed. Kristy created Chronically Simple to manage her healthcare, and with the intention to empower others to do the same.
Chronically Simple alleviates the administrative burden, allowing patients and caregivers to manage the complexities of living with a chronic illness or disability, without additional, unneeded stress. Take control of the administrative work by linking prescriptions and test results to physicians, to appointments, to expenses, and care team members, giving you a truly holistic view of your healthcare. www.chronicallysimple.com
Outline of the Episode:
● [01:35] What “Ehlers-Danlos Syndrome” is and Kristy’s path to her diagnosis.
● [05:11] The turning point in her journey, finally being diagnosed with Ehlers-Danlos Syndrome.
● [11:14] Finding a new passion and purpose amidst her healthcare struggles.
● [16:12] How the idea of “Chronically Simple” started and the challenges she faced building upon it.
● [22:22] “Healthcare is a partnership” and the value of trust between patients and specialists.
● [26:36] The struggle of advocating for yourself while still needing to ask for help from others.
● [36:41] How to deal with misalignment between you and your limited choices of healthcare specialists.
● [39:40] The most significant challenge Kristy faced when navigating the healthcare system and how she overcame them.
● [42:20] How Chronically Simple works, according to Kristy Dickinson.
● [45:10] The response of both patients and healthcare specialists to Chronically Simple so far.
● [52:03] Kristy Dickinson’s favorite patient resources when dealing with chronic and complex illnesses.
Chronically Simple Website: www.chronicallysimple.com
Kristy Dickinson’s LinkedIn: https://www.linkedin.com/in/kristy-dickinson-b65a472
Contact Nikita Boston-Fisher!