What Do You Wish People Knew About Living with Chronic Kidney Disease?

When we say that we are suffering from a chronic condition, it does not just mean that it just includes our physical existence in jeopardy, it also means that there are other aspects of our life that get impacted as well.

It is just not enough to say that living under a chronic condition brings so much change, and that is what we are talking about today. So, the world knows that living a life with chronic kidney disease is more than just a medical tag.

Life after a CKD diagnosis

When my husband received his diagnosis, although it was early-stage CKD, life changed its meaning for me as well. It meant that I just cannot be carefree about so many things from now on and neither could he. Now it also meant that we are different from the rest of the population which is living a healthy life. Everyday chores get difficult to be done under the changed circumstances, more than anything our lens to see this world and ourselves has changed.

I just retired a few months ago and he is retiring next month. Things just got real for both of us. The only words I heard the doctor say at that moment were you have chronic kidney disease that is incurable.

Making lifestyle changes

We soon realized that having CKD, we are unable to go out and eat whatever we want to. It took some time for our friends to understand but gradually they took hold of it. His work colleagues stopped passing remarks that he was on a diet. Once he made them understand that it is not something to joke about and how serious this illness can be.

We are both trying to walk the same road under different circumstances, and it changes everything for us. We have to think about 100 things before saying yes to going on a trip, and we both calculate our diet plan before dinner.  I always make sure we have our emergency stash of medication, just in case.  We have to make time out of our already worked-up schedule to make space for important doctor’s visits.

It is not just like that, people who are on dialysis or advanced level of treatment have to fight their fears, and uncertainty, for their changed life. At times we do have to spend more time in bed than out on the road living the best of our lives. Our mental health is something that we have to take a hold of.

We are all in this together

We are not just concerned for our stability, we also have to see our loved one’s worried eyes sticking to our weary bodies. More than anything, we are fighting the odds every minute passing. There is a battle going on inside and outside of our existence.

It is just not about our falling health status, it is also about how we pick up ourselves every day to fit in a jar where we do not actually belong because the people surrounding us cannot understand that we do not belong in that jar in the first place.

To all my CKD fighters, you are doing an amazing job. We are all in this together.