Dialysis and Mental Health

For me, dialysis was something that totally took over my life and turned it upside down. It forced me to drop my board exams. Like, can you imagine? One more step and I would have been out of my school life, but my kidneys decided that okay this is the right time. We should leave. Just one month before my exams. 

In India, especially where I live, people think - Okay he/she has kidney failure. They will go for dialysis and then maybe get a transplant. To them, only the upper layer is visible and not the scar and pain deep down. Maybe that is why there's no rush regarding awareness about this chronic disease. 

Well okay, we all know about the side effects of dialysis - headaches, cramps, ascites, anemia and many more. What we really don't think about is what happens with the mental strength of a dialysis patient.

I have dealt with anxiety, panic attacks, a constant fear that I might be getting a seizure (OCD?). My brain was on fire actually. All the time. I want to tell you that how a patient is dealing with dialysis also depends on how much facilities are there in his/her area. There was only one dialysis center in my area with two machines in the year 2014, my second year. And there was this constant fear in my mind, that I will get sick and both the machines would be occupied and then I will have to suffer. I was afraid of suffering. Shortness of breath is one thing that I could never bear. At times I used to think that maybe death is better than this. Anything is better than this. I was 18 then. Most of the times, we rushed to the hospital only because I feared that I was getting sick. And the other times because I was literally dying. I remember opening the door of a moving car because I was suffocating inside and was terribly breathless. The dialysis center was three hours away. That journey scares me because that feeling of dying and to not die is terrible. Only because my city was less or I should say barely developed in terms of medical advances. Even now there are two dialysis centers running with total of ten machines. And there is no nephrologist in my city. So if you have any emergency, either the dialysis technician will help you or you will be referred to higher centers in some other city. So our lives depended on dialysis and what percentage of fate is working with us on that particular day. 

I don't want to be negative but this was my reality. And the reality of lakhs (100,000) of people here. The more you'll dig, the more terrifying stories you'll find. I suffered both physically and mentally. And mental problems are also a part of our physical structure only. When you are getting panic attacks for a reason, then it's understandable. The point when you start getting panic attacks for no reason is where the problem starts. And this is what was happening with me. Dialysis saved me, but also pushed me to a very dark phase and I was forced to find comfort there. I was isolated, completely. What could I tell my parents? My dad used to bring me home after dialysis. And I used to hide in my room after that, I didn't explain to them that I am anxious and worried because I had no idea about what. Also, dialysis here is a matter of oohing-aahing. When people know that you are on dialysis, they suppose you are dying. Yes that is true. One more reason I avoided people. 

What I am trying to say is, dialysis patients need support in every aspect. They clam up and internalize and when you are locked up in your mind, then things like anxiety and depression knocks in.

I know not everyone goes through the same struggle. Everyone has there own problems to deal with. But I have myself seen people dealing with mental issues. I have seen an old man pulling out his needles in a matter of second and trying to run away. Why would he do that? 

I have got a transplant now, but still I have to overcome my fear of tongue, fear of going in public, anxiety. Even now when I am alone, that feeling of getting sick again strikes again. But now, I share my problems with my friends or my sister. Speaking them out loud or writing them to my best friend eases my mind. 

I hope we understand this aspect too. If you are a dialysis patient suffering from such issues, speak them out loud, write them down, share them in any possible way. Lack of understanding also explains why there are so many myths and stigma surrounding this disease. 

And if you are a friend or guardian or family member of a patient dealing with Chronic Kidney Disease, then understand that you are needed. Even if a patient says he/she is fine, agree but still don't let them go through this phase on their own. Please educate yourself too. It's good to learn about everything related to CKD if you have a warrior with you. Be patient. Be there. 

Author: Mitushi Pandey, GET LOUD Ambassador

Location: Uttarakhand, India