For the last two months, a small group of dialysis patients has been meeting once a month to discuss mutual problems and share tips on coping with kidney disease. We meet at NephroPlus’ East Marredpally center at 5 p.m. on the first Saturday every month.
The concept of a support group is really great. Only someone on dialysis can understand what fluid restriction means. Only another person on dialysis can understand why I never keep a bottle full of water near me. There are these very minute, specific things that people on dialysis share which nobody else can even begin to imagine and think about.
It is not a very structured discussion. It is more of an informal sharing of problems and solutions. And yes, invariably, ‘mind issues’ come up once in a way.
The way ahead, I feel, to make it more meaningful by having a topic and may be an expert speak and answer questions followed by a discussion.
Getting more patients to participate is important. The trouble is many dialysis patients are overwhelmed with their day to day problems. They have no time or inclination to get involved in things such as support groups. The concept is generally still alien to our society. People don’t see the benefit. So, they probably don’t like the idea of going on their non-dialysis time to discuss – of all things, dialysis!
There is still an element of denial among many patients. I have talked to some patients who don’t want to feel like they’re patients and they feel they’re reminded about their ‘patient’ status. Going for these support group meetings makes them feel like there’s something wrong with them!
What I would like to say to them is that there is nothing wrong in being a patient. It is not something you did wrong that you have to be ashamed of. It is a reality of life. The sooner you accept it the better it is for you. Talking to other patients helps me cope with my disease. I am sure it helps others as well. When I talk to others having similar problems as me, it reinforces the fact that I am not alone facing this. There are others like me as well. This can be a very powerful feeling.
If you are on dialysis and would like to join us, please walk in to the NephroPlus East Marredpally center on the first Saturday of every month at 5 p.m.