What I Wish People Knew About Living With CKD
Last updated: August 2023
The first thing I want people to know is that some illnesses may not be visible, until they are. I have had really bad experiences and lectures about not being "disabled enough" to have a handicap sticker. People believe those things are exclusively for people who are older or have a serious physical disability. Well, not everyone's disability is visible and they are still serious, and should be treated as such.
Managing my health the best way I can
Being from New Orleans, it can be difficult to avoid sodium. My diet is low sodium, or even better, no salt all. When we are out to eat, please do not ask why I ordered something healthy compared to what you have. No, I do not think that I am better than anyone else. I am just trying to manage my health in the best way I could.
Also, the sun is not my best friend, so please do not be upset if I happen to cancel our plans due to the beautiful weather. My skin is highly affected with chemotherapy drugs and it feels like my skin is burning sometimes. Why don’t I just cover up? Because, wearing a turtle neck in the summertime, in southern weather, is like asking for a hospital visit from a heatstroke. Instead, I just choose to stay at home.
Life can be unpredictable
I never know how my day will turn out due to the chemotherapy drugs I take, and as a result, I might miss a birthday or a major event. It is not on purpose. I just did not have the strength to get up that morning. And yes, some of my symptoms might disgust others so I that way. When I need help, I will definitely let you know.
Yes, I can still bring a child into the world and live. People with chronic health conditions are still allowed to have a life as well. Do not think that we cannot have somewhat of a normal life. Yes, we want people around us and others want us around. Some of us have careers while going through CKD as well.
Please don't call me strong
For hospital staff, we aren’t faking symptoms. We are really tired and not lazy. Having chemotherapy pushed through your arms every four weeks will do that to your joints. Especially being on high dosage of steroids.
Finally, I hate to be called strong. I had no choice but to be strong. This was not something I choose. Trust me, at home, I do not feel strong. Sometimes we just want to be told that someone will be there and they know how hard it is for us. Sometimes we just need someone to help.
This or That
In addition to chronic kidney disease, do you also live with diabetes?
Do you have chronic kidney disease without any symptoms?