Meet Caprisha, a passionate Care+Wear ambassador and resilient chronic illness warrior living with epilepsy and hypermobile Ehlers-Danlos syndrome (hEDS). Caprisha’s chronic illness journey is one many warriors can relate to—feeling the pressure to stay independent while battling fatigue and new limitations. But a simple, powerful piece of advice helped her turn rest and asking for help into acts of strength.
Discover how this mindset shift transformed her approach to life with epilepsy and hEDS.
The Best Advice I Received During Diagnosis
When I was first diagnosed with epilepsy, I was reluctant to give up the life I knew before or to ask for help. In typical American fashion, I felt the societal pressure to continue working a job and be independent. However, my dad had been chronically ill for a long time. He told me that now my “work” had changed.
My new goal was to do the best I could to keep myself alive and as healthy as possible. Resting is actually work. Asking for help is work, too. I had to learn how much I could reasonably do and then develop the skills to get the rest done—like asking for help. It is just like any other job.
How That Advice Changed My Mindset
I had never thought of it that way before. I was focusing on the loss, not how to move forward. It helped me shift my perspective from “resting is lazy” to “rest is my 2 p.m. meeting with the boss.”
I still mourn the loss of what I could do before, but it is easier for me to ignore comments from people who don’t understand my life. It helped to free me from the internal guilt.
Passing It On to Fellow Warriors
I have shared it with many newly diagnosed warriors I have met along this journey. While I can’t know what lasting impact it has on them, many express the same ah-ha moment I had.
Shifting the focus from a defensive position of trying to alleviate the guilt of being chronically ill to being proactive and working to make all your meetings (naps, taking meds, doctor appointments, etc.), turning in reports (researching ways to make life easier), and all the other things that go with the full-time job of being chronically ill.
What the Care+Wear Community Means to Me
Before joining the Care+Wear community, my social media connections were focused on people and accounts with my conditions (epilepsy, hEDS, etc.). I have learned and continue to learn so much from them.
However, the Care+Wear community has given me the opportunity to see how people with other chronic illnesses accommodate their challenges, which has given me so many ideas. I have been so inspired!
It has also reminded me that the chronically ill community is bigger than my little corner, which is a comforting thought.
Follow Caprisha on Instagram to learn more about her journey.
Inspired by Caprisha’s words? Join the conversation and share your own wisdom or story with the Care+Wear community. You never know who might need to hear it.
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