By Dustin Miller, CDC Ambassador
I was diagnosed with focal segmental glomerulosclerosis (FSGS), a type of chronic kidney disease, when I was 16. I spent several months in the pediatric intensive care unit for sudden kidney failure. It came out of nowhere. The whole process of testing, injections, infusions, surgeries and exhaustion from sitting in a hospital was overwhelming. On top of that, there was a lot of guesswork involved.
My nephrologist at the time performed a lot of trial-and-error treatments, one of which involved taking me off antidepressants that I had been on for years. It was hard to comprehend all that was happening to me, especially since I had been a pretty healthy kid up until that point.
There was a strong sense of loneliness that came along with the chronic disease, too. During my time in the hospital, I met a few kids with chronic diseases like me. I would talk to others on medical forums as well. Still, it was hard not to feel alone at that time. None of my friends had gone through what I had, and at that time, teenagers with chronic diseases were still pretty rare.
The FSGS, auto-immune deficiency, chronic fatigue, sinusitis and diabetes have all presented their own set of challenges and each time, have forced me to readjust my way of life. Each new disease created new daily routines—taking medications, injections, checking blood pressures, checking sugar levels, watching my diet and so on.
The thing that really helped me through it all was the determination to live a fulfilling life despite my chronic disease. I know that my life won’t be “normal” or at least it won’t be the same as someone without a chronic disease. At the same time, this realization has forced me to have an intentional life, and, in a lot of ways, a more fulfilling life than I probably would have had without chronic disease. I certainly don’t think I would take part in such meaningful life events as I do now with advocacy groups, speaking to people, telling my story, and getting the word out.