Things You Shouldn’t Say To Someone With Chronic Kidney Disease

It has been a few years since my diagnosis of chronic kidney disease (CKD). This journey has had many ups and downs. I’ve had to face many challenges both emotionally and physically. Throughout this journey, I have heard many things that might be well-intended, but believe me, these things can hurt. So today I will share the things that have been said to me as a person living with CKD.

"You don't look sick"

The one that always gets me is – you don’t look sick. This is the most repeated thing that I have heard from so many people, even with other chronic illnesses that I have. This comment makes me feel like I don’t matter. Let me tell you CKD is a silent disease that you don’t see. There are no physical symptoms that will make you think that the person is going through some kind of pain.

You can’t see fatigue, pain, nausea, and many other symptoms that I go through. Just because one can't see my pain doesn’t mean I'm not suffering. This comment is a reminder that we often judge people's illness through their physical appearance which is very frustrating.

"At least it's not..."

Another one that gets to me is "at least it’s not cancer." I know people say this for encouragement and support. I am also thankful to God that things could have been worse for me, but they aren’t. This comment just diminishes all the struggles that I must go through daily. I know people say it positively, but it can hurt me as I have a lot to endure in this journey. CKD is life-changing, and I do go through a lot. I constantly manage everything, and if not managed correctly, can lead to more illnesses. Statements like this make me feel as if I'm overreacting.

Unsolicited advice

Why don’t you try this? I can't stress enough how irritated I get with this line and in some cases how wrong and harmful this can be. I know if someone is suggesting a remedy they care for me. But the remedies can be overwhelming as I, and almost all other CKD patients already have a lot to do like managing our diet and taking medications to add another thing on the plate. I am trying. It makes me feel as if I am not doing enough. Apart from that sometimes the remedies can be wrong, so if someone suggests any remedy make sure that you consult your doctor first.

You should not eat that. There are many dietary restrictions that I must follow while managing CKD. I as a patient am aware of what I can eat or what I can't in my diet. Trust me, I have done my research and spoken to others. All of us can’t follow the same diet. I am so happy this work for you and appreciate your sharing. People around me should trust that I am making informed decisions and I also want to be better for myself.

What I am saying is not to diminish what advice people are giving me in our communities or support groups. This is mainly for people who know us personally like family, friends, and co-workers.

Remember, we are all in this together.