In my last post, I talked a lot about forums on DaVita’s website. I wanted to narrow things down a bit and talk about the striking and sad correlation between depression and chronic disease, in this specific case, CKD.
I mentioned that there were different sub categories of the forum. Many of these are logistical and broad, like ‘Nutrition’ or ‘Dialysis.’ What I found interesting, strange at first even, was that there is an entire section of the forum dedicated to depression. I decided to peruse some of the topics, and what I found was absolutely heartbreaking:
The fact that there are so many patients, my father included, who have struggled and continue to struggle with their mental health in addition to their physical health is absolutely baffling to me. It makes sense that they get depression. They are constantly battling a disease that they know they will never be able to win. They can’t watch Food Network without wondering, at least a little bit, what it must be like to have dietary freedom. I can’t say from personal experience how tough it is, but even from just observing my dad and listening to other patients I can say that it must be absolutely draining.
It’s circular; it’s repetitive.
On top of that, because many patients are of older age and/or cannot work, they can’t distract themselves by keeping busy. What I can say from experience is that, with enough time alone and a constant pestering, anyone can be driven to bad thoughts.
“I am tracking time.” “I feel like life is over.” “I am afraid I will be sick everyday.”
“It’s like being in the desert with no water and coming to that moment when you have to make a decision to just lay down and die or keep pushing on.”
“I am tired of going to treatment.” “I will be the happiest man alive the day I die.”
“I am scared and alone and I don’t know if I belong here or not….I am shaken to the core.”
“I can’t kill myself because I know I would end up in hell” “Just fed up with all the crap!”
“I went to bed crying and I woke up crying.” “I am as alone as I can ever remember.”
“please believe me when I tell you, no one here gives a damn.”
“Death is the only thing I have left to look forward to…I dream of death every single day.”
“I don’t want to live the rest of my life on a machine.” “I am so lost in life”
“I constantly think of how to end my life. Have the means, just don’t want to make a mess.”
There are patients who decided to stop getting help, who stopped getting dialysis because they wanted it to be over already. Even my dad has told me that he’d rather die than live on dialysis, that there’s no point to living with a body that doesn’t work. He tells me he hates being a burden and he wishes he didn’t make things hard on us.
Kidney disease, or any chronic disease really, expands and affects every single piece of your life. You can Google a proper diet; you can learn how to live a healthier lifestyle. But how can you tell someone that they won’t be able to get out of bed some days because living in itself is too exhausting? How can you teach someone that missing out on their children’s sports games and graduation is normal? How can you make someone know that it’s okay to live with constant fear and anxiety, with a constant reminder of their mortality? How can you convince anyone that living that way is normal?
It seems impossible.
But, amidst the sadness and the negativity, more than the uplifting comments that said “You can do this!” and “Believe in yourself!”, I found this comment the most helpful: “While kidney failure is certainly a terrible disease, it is far preferable to heart failure, lung failure and liver failure, all of which are fatal and cannot be treated long term with anything other than a transplant. Kidney failure is the only major organ failure for which there is an ongoing therapy/treatment that sustains life – dialysis… If I have to choose major organ failure, I’ll take kidney failure, thank you.”