What It's Like To Live With An Invisible Illness

Having an invisible illness is interesting. In my experience, it has taught me to internalize a lot of what I'm feeling. I have always been a see it to believe it kind of person. Therefore, being born with chronic kidney disease was really something I had always dealt with but never really suffered any direct symptoms, especially in the earlier stages. This made it difficult to fully embrace CKD as apart of my every day life.

Not having symptoms made it easy to ignore my CKD

Although I was in and out of hospital since the age of two with kidney infections, they began to slow down once I hit my teens and all I cared about was having fun. When I was younger, having an invisible illness was difficult. I honestly barely even acknowledged I had chronic kidney disease at all. All I wanted to do was fit in and do what everyone else was doing.

I didn't speak about my disease with friends or family and I certainly didn't act like I had a failing kidney. I felt that because I didn't really have symptoms nor did I look sick, it was kind of hard for me to believe I was really sick. All I had to go off were these blood tests and constant appointments.

Although I never had many symptoms, it made me internalize a lot about how I was feeling and whether other people were experiencing things I was, or if I was feeling things more intensely due to my failing kidney. It was constantly in the back of my mind. Sometimes I would question if I just making it up and maybe I don't feel as bad as I think because I look fine. It was all very confusing.

how my perspective has changed

Now being 24 and stage 5, my perspective is a bit different... but so is my kidney function. Due to the decline in my kidney function, I have had more symptoms and I have started dialysis, and so I've had to embrace having kidney disease because it was ever so apparent in my present life.

I have practiced listening to my body more and trusting myself when I feel something off rather than trying to ignore it or push it away. The internalizing of how I feel still hasn't gone away, as I look healthier now at stage 5 than I did at stage 3. It still doesn't make sense. But I'm 24 and do feel a bit worse for wear some days but have tried to accept my reality some days harder than others.

Outside of my perspective, I have heard multiple times that I don't "look sick", which I take as a compliment. I do understand that if you don't look sick people don't tend to treat you as if you are sick, which can be irritating in times of need. Some days when I am feeling a bit rough I do wish people could see how hard it can be, as I'm not good at communicating that to others. But some days I'm thankful they can't tell.