But You Don’t Look Sick

How many times have we heard that one? I am a gun-ho, high-spirited, life-of-the-party type of person. Yes, I might be having a bad day, but you won’t know it. I'm 65 and not letting no grass grow under my feet. Had a chronic illness for six decades. I get this a lot, you don’t look sick or you don’t act sick. Dude, I really don’t know what to tell you.

I was talking to my son, and he gets that statement often. He wanted to know how I have handled that statement thrown at me all these years.  Most people are surprised when he tells them that he has chronic kidney disease and does dialysis seven days a week.  The only thing that people know is that he takes dialysis but that is just the beginning of his illness.

CKD has so many "unseen" symptoms

He has many invisible symptoms when it comes to his chronic kidney disease. This is how this disease goes undetected. I just want to add this little tidbit: never say to someone who has a chronic illness, 'you don’t even look sick.' I remember years ago someone telling me at the office, you looked so nice, I can’t tell that you’re sick. I was very upset on the inside, so I politely told her, yes behind all of this is the 12 pills I take a day, the pain I’m in constantly, or the constant visits to the doctor. But thank you for noticing, that comment was never made again to me by her.

Everyone is different, of course. But I have found that others don't realize that it is difficult for chronic illness patients to wake up in the morning. He has stage 5 chronic kidney disease.

Symptoms you might not see

His diet is restricted for a couple of reasons. He can’t have too much salt, as it pushes up the blood pressure, and he has to limit foods that are high in potassium and phosphate because his kidneys just cannot process them.

Due to his kidneys not working properly, they cannot filter out all the potassium that goes in. In turn, this causes extreme itchiness.

The type of dialysis he does is peritoneal dialysis. This involved placing and draining fluid into the stomach every four hours. He has a full-time job, so during his lunch break, he would go into his office and do this. It became part of a daily routine.