I am not my disease: life as a dialysis mom

Anytime we hear about someone who suffers from a chronic disease, it’s easy to use the disease as a label to describe the person: “There's so and so, she has cancer,”  or “He’s a diabetic.”  Everyone is guilty of doing this at one time or another, and I have noticed that many doctors unknowingly make this mistake, too.

Are we just our diseases or are we more? When I look into the mirror, it reflects back a person, not a disease.

I am Cortney and I have had type 1 and type 2 diabetes for just under 30 years. I have been diagnosed with end-stage renal disease (ESRD, or kidney failure) and have been on dialysis for almost two years. When I look into my mirror, I don’t just see a failing pancreas and two kidneys that have been laid off. I don’t just see a very sickly person who might die. I see a woman and a mother whose life and personality have many different dimensions. A woman with a family that needs her more than ever.

It wasn’t always that way. In the beginning, when I was going through hemodialysis and had more than 15 graft surgeries and 17 tunneled catheter procedures, I felt like my illness was stamped across my forehead and imprinted on my heart. End-stage renal disease and hemodialysis seemed to have taken over my whole life. I was a patient. I barely remembered who I was before the disease.

Eventually, I’d finally had enough of being defined by my disease. I needed to take charge of my life. The first time I spoke up about what I wanted in regard to my treatment, my doctors were stunned. I took control and it was the best choice I had ever made--I think it may have saved my life. For the first time since I began dialysis, my doctors saw me as a whole person--a mother, an individual--and not just as a patient. Even more importantly, I was seeing myself as more than just my disease. Gaining my voice gave me back the parts of my life that I had missed. I was Cortney again, not just the lady with ESRD on dialysis.  My disease no longer consumed my whole life.

I call myself “dialysis mom,” but what I really mean is, “I a mom who is on dialysis.” I am a mother first and foremost. I am the girlfriend of a very strong man who has stood beside me through surgeries, procedures, and numerous hospital visits and stays. I am also an artist, a crafty person of several different trades, and I have a background in human resources. I speak two languages, German and English. I studied German literature, English and mathematics when I was in college. I am an active parent in my son’s life and the life of my boyfriend’s 17-year-old son. I was treasurer and assistant to the den leader and scoutmaster in my son’s Cub Scout troop. All while having this illness. 

Most recently, I became a blogger. I felt a need to reach others like myself and felt I could possibly help those in similar circumstances with any chronic illness, not just ESRD. I know firsthand how difficult it is to crawl out from the shadow that a disease like ESRD can cast. I also know what it is like to not have a voice and to constantly have to remind others not to pity me--not to see me just as a patient with a chronic illness. My advice to others is to remember who you are.  I am Cortney, and this is my life as a dialysis mom, not just a dialysis patient. 

Posted: | Author: Cortney Smith

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