Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m struggling to do something I normally can do easily due to some random physical challenges that flare up directly or indirectly related to cystinosis. During those moments my focus can falter and my motivation can flounder. My friends and family are always there for me in those moments to cheer me up, guide me, give me perspective and keep me on a positive path. For me they are my greatest givers.
My mom and dad have given a place to stay for the past four years while I’ve been trying to get myself financially secure. My best friend, Keegan, has taking me out to grab a beer or have some lighthearted fun during times of stress related to relationship or sickness issues. Working with my ALAB (Adult Leadership Advisory Board) group has helped give me more of a sense of purpose in my life.
My tips for friends and families supporting others with cystinosis is to have patience with them. Talk to them but don’t push them to open up to you. When they’re ready to open up they will. Don’t make everything about cystinosis. Cystinosis is a large chunk of life and it informs a lot of things but it isn’t the only thing our lives revolve around. The biggest reason I don’t tell new friends about cystinosis right away is because, in my experience, if I lead with that then people tend to think of me first as a sick person. I am not my disease; I am a normal, fully fledged three dimensional person. That doesn’t mean if someone asks me why I take all the meds I take that I won’t be 100% honest with. I always am.
Always be open and honest.
For this year’s Giving Tuesday campaign, we are honoring Steve’s friends and family and the “Great Givers” who’ve had an impact on our cystinosis community. If you’d like to learn more, visit our event page.