Ten Things Your Friend On Dialysis Wants You To Know

January 22, 2016 | By Stu | Filed in: Uncategorized.

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  1. You don’t understand what it’s like to be on dialysis and you never will, but that’s ok, and we thank God you don’t need to. Your empathy and even sympathy is very much appreciated, but you’ll never understand. You’ll never understand how tiring it is feeling sick most of the time, how debilitating it is feeling tired all the time.
  2. That time you came to visit us at the dialysis unit and we didn’t seem that happy to see you, doesn’t mean that we don’t want you to ever visit again. You don’t know what was going on that time you did visit. We may have had to be stuck five times to get two good needles with acceptable blood flows. We may have blown our fluid limit and were taking four kilos off, which makes us feel like crap. We may have crashed our blood pressure, or any one of a number of things that made for a shitty dialysis. Please don’t take it personally, and please don’t take it as a reason to not drop in and say hello from time to time, but maybe call first next time.
  3. Please don’t ask whether we should be eating something. If we’re eating it, we can. We’ve weighed up the upsides and downsides, and chosen to eat that thing that might make our dietician have a rage fit. It’s tiring and frustrating to have to think twice about every single thing we put in our mouths. Sometimes we just have to say “screw it”, and have something we’re not supposed to eat. Please don’t make it harder for us by questioning our judgement.
  4. We’re probably pretending things are better with our health than they actually are. When you ask us how we’re going and we say “OK”, we’re probably lying to some extent. There are probably things going on that we don’t talk about. Maybe some sores somewhere, maybe an insufferably dry mouth but we can’t afford a drink right now, maybe our blood pressure is too low and we get dizzy when we stand up, maybe we have bone pain from hyperparathyroidism.There’s always something going on with a dialysis patient, we just don’t think you need to worry about them, so we don’t tell you.
  5. We’re sorry when we have to cancel plans for the tenth time. We really are. Sometimes we just don’t feel up to getting together with you, we’re sick, we’re tired, sometimes we just don’t feel right. This is not a reflection on our feelings toward you. We crave social interaction, it’s a simple fact that dialysis patients tend not to have much of a social life, we crave spending time with those we care about, but sometimes it’s just not possible. Please don’t stop asking us to get together.
  6. There is no cure, only treatment. This is one of the hardest things for someone new to dialysis to get their head around. There is no cure for End Stage Renal Disease (ESRD). The clue is in the “End Stage” bit: without ongoing treatment we will die. There are two possible treatments for ESRD; ongoing dialysis or transplant. Both of these options come with their own unique set of problems. By the way, transplant is a treatment, not a cure.
  7. It’s really scary to have to do a treatment that if we stop, we will die. This is another one of the hard things to get your head around. If there’s a natural disaster or some other reason we can’t get our treatment, we will die. If we decide to stop treatment, we will die. Every day we have to make the conscious decision to live, while you live just by virtue of the fact that you are alive. Very few people have to actively choose to live every day.
  8. We’re probably a bit bitter toward the world. Not you in particular, but having kidney failure is a bitch. The interminable hours spent on dialysis, the massive needles for those of us on haemodialysis, the constant doctors appointments and blood tests, having to watch everything we eat, having to keep track of how much we’ve drank. It’s a bitch and there will be times we just can’t handle it any more and might lash out.
  9. We want to do normal things with you. I pointed out above that there will be times we can’t do things we’d like to, but that doesn’t mean we don’t want to do normal things with you. We’d love to go bowling, fishing, or just for a quiet drink at a bar. Please keep inviting us!
  10. We appreciate when you make the effort to understand and cater to our diet restrictions. I know I said above that we’re big enough and ugly enough to make our own decisions when it comes to what we put in our mouths, but we really appreciate when you make the effort. It’s really frustrating to turn up to a dinner to find that out of the three main course choices, we can only eat one, and the one we can eat is something we don’t like anyway. We don’t expect you to cook a whole renal friendly banquet, but we do appreciate you asking whether we can eat what you’re planning on cooking.

Overall, the most important thing that your friend on dialysis wants you to understand is that we love you. We want to spend time with you, we want to be a part of your life. We’re sorry if it gets hard to be our friend sometimes, but we’re trying our hardest to be a good friend to you.


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