7 things not to say to a kidney disease warrior

Being chronically ill is hard enough at the best of times, especially when our illnesses are hidden and so misunderstood. I have to say that for the most part I have been very lucky, in that the majority of my family and friends are very supportive, understanding and interested in trying to understand more about how my illness affects me in general and my day to day life. However, after being on a few Kidney support Facebook groups I have very quickly learned that not all families and friends are like mine, in fact from some of the stories I have heard, some people are actually downright brutal!

Over the years, and more specifically the last few as my Kidney function has slowly deteriorated, I have been given a whole host of well meaning advice, which for the most part has been appreciated, even if the actual advice given isn’t necessarily the best advice to follow. But being on the groups and speaking to other Kidney warriors I am shocked at some of the things people have been “advised” and some of the comments that have been made to them from supposedly well-meaning family or friends. It is with all of that in mind, I decided to write this blog, collecting some of the comments and advice that we battling warriors receive that can often leave us rolling our eyes, shaking our heads and sometimes even leave us feeling quite hurt, upset and deflated. So here are the top 7 things not to say to a kidney warrior.

1 – Well You Don’t Look Sick To Me!

Now this is a big one! If you have ever said this to a chronically ill person, then you seriously need to have a word with yourself! Funnily enough just because someone, in your opinion, does not “look” sick, does not mean that they aren’t actually sick! Right up until the last couple of weeks before needing an emergency neckline inserted to start dialysis, I tried my best to at least look human, I put make-up on, I smiled, had fun I also, believe it or not, laughed on occasion. Just remember when you are seeing someone, you’re only really seeing a snippet of their life, in fact, you’re probably only really seeing a snippet of that day. Typically, as kidney function slowly starts to worsen a person can feel a whole host of symptoms and as everyone is different, people can experience different symptoms at different stages. Some people can have a function as low as 5%, with blood work off the almost off the charts and feel relatively okay, some have even said they didn’t feel much different at all, whereas my function was around the 13/14% mark and I felt terrible, by the time I got to 9%, I was so ill I needed to start dialysis immediately! So, whilst someone might not look ill, don’t make the assumption that they are not actuall ill and possibly experiencing any range of symptoms from nausea, vomiting headaches, itching, swelling to fatigue, brain fog breathlessness and dizziness!

2 – You should do Meditation or Try Some Alternative/Herbal Remedies?

Quick disclaimer before I get in to this one: I am actually open to alternative methods and I also definitely do recommend meditation! However, whilst these do have some benefits, especially with health, trying alternative medicines is not always advisable and could impact the function of the kidneys further, especially as some herbal remedies or medicines can interact with various medications and can cause devastating effects. Also, it is highly unlikely that alternative medicine, herbal remedies or even meditation will cure, fix, undo or reverse chronic kidney disease and even less likely when the disease is more advanced. At best, depending what stage someone is at and what caused it in the first place, you may be able to slow down or halt the progression for a while. I cannot stress enough that kidney patients do have to be extremely careful with anything they take and should always seek guidance from their care team, who are medically qualified to advise them

3 – You Should Eat a More Clean Diet

Again, quick disclaimer, I am definitely on board with clean eating and there are most certainly some amazing benefits to be had. But once again, this is not always as straight forward for someone who is living with this disease and as our kidneys move in to stage 4 and 5 (stage 5 being renal failure) we need to be more careful with the food we eat, specifically paying attention to our potassium and phosphate intake. Because our diet plays such an Important role with our disease, we have access to fully qualified renal dieticians who has been specifically trained to advise us on our diets based on results from our blood work. For example, if our potassium levels are getting too high we may be advised to limit/reduce the intake of foods that have higher potassium levels, such as Avocado, bananas, tomatoes, baked beans, manufactured potato products, breads containing nuts and seeds, chocolate… the list is really quite extensive, listing all the foods would require its own blog post! And if that doesn’t bring it home to you that we have to be careful with our diet then perhaps the fact we are very strongly advised not to eat star fruit because it could be FATAL, will hopefully help the penny to drop. Telling or “advising” a kidney patient on their diet, without any real knowledge could potentially have very serious and deadly consequences!

4 – You Just Need to Drink More Water!

Usually this is fantastic advice, I do love water and as a family it is our main go to drink, we don’t have any squash or fizzy drinks in the house at all, mainly because my eldest can’t stand the smell of any of it and I can’t stand the taste of fizzy drinks anymore! The problem with telling a kidney patient to drink more water is that you do not know what stage of the disease they are at and what restrictions they have been given. Quite often some patients who are on dialysis and are no longer able to urinate or hardly urinate much at all, due to their kidney failure are likely to be put on some form fluid restriction. As the ability to rid the body of excess fluid reduces, that fluid then stays inside and builds up, causing swelling of the ankles, calves, hands and/or face, this extra fluid is then removed through the dialysis process. So, while drinking plenty of water is generally considered the best advice for most things, that might not always be the case for someone with renal failure.

5 – You Just Need to Think Positive, What You Think About You Bring About!

Argh! This one really grinds on me! I am actually a very positive person, I always look for the positives in every situation, I am grateful for the life I have, because despite having faced a fair few challenges, I do feel that I am exceptionally blessed. With that said, no amount of positive thinking is going to reverse or cure this disease! I have often heard the phrase “what you think about, you bring about!” and to a certain degree that is true, if you are always thinking negatively, then you will definitely notice more of the negative things around you which can bring you down and likewise, if you think more positively then you see far more of the positives around you which can lift you up. But positivity alone will not change this disease, it can make it easier to cope with when times get really hard and practicing daily gratitude for all the small blessings does help a lot, but telling a person to think better is not helping them at all, in fact the chances are it just makes them feel even worse.

6 – If You Get a Transplant, You’ll Be Cured!

Sorry to say, but there is no cure for renal failure, there are only treatment options. Secondly it isn’t quite as straight forward as just “getting a new kidney” unfortunately they’re not something you can quickly pick up and your local M&S, as shocking as that may seem. And if someone is fortunate enough to be given the gift of a transplant, as amazing as that gift is and can 100% give someone their life back, that person will forever, until the day they die, be under the care of a renal team who will consistently monitor them with clinic appointments and blood tests to ensure the continued health of the transplanted kidney, not to mention that they will also be on a cocktail of drugs to aid the new kidney and prevent the body from rejecting it. These additional medications also bring along with them their own risks, such as increased risk of certain cancers! Furthermore, not all transplants are successful, not all transplanted kidneys last and there’s also a fair amount of people who are simply unable to have a transplant at all. I am definitely very fortunate that I have people who are willing to be a live donor, even more so that I have a match who is currently undergoing the lengthy work-up process right now, sadly though, there are people who don’t have potential live donors either because no one has offered, or no one is a match, and there are also those who require a kidney and pancreas transplant, these people on the transplant waiting list can wait for years and years and in some cases not even make it!

7 – You Just Need to Stop Being Lazy/Try Harder/Get an Early Night

When someone with more advanced kidney disease says they are tired, feel drained, weak, lifeless exhausted, it is not simply because they are lazy or have had a lack of sleep, although sometimes that can also be a contributing factor as some of the other delightful effects of this disease are insomnia, leg cramps and the need to go to the loo several times in the middle of the night! One of the big main factors that causes fatigue, exhaustion, dizziness, breathlessness and the feeling that someone has literally been syphoning off all the energy without you even knowing it, is that the kidneys are responsible for producing the hormone Erythropoietin, which signals the to bone marrow to produce red blood cells. When kidney function declines, the production of this hormone is compromised, therefore the production of much needed red blood cells is affected leaving kidney patients anaemic and requiring additional treatment, usually by way of an injection of the hormone to stimulate the red cell production. So, when someone says they are tired, drained, struggling, exhausted, they are not lazy, their body is very slowly ceasing to function properly!

Now these are just 7 points, a small fraction from a very long list of things that we are told, advised or questioned about, but hopefully these few points can help shed at least a little light on some of what we go through on a daily basis, the challenges and obstacles we have to face and overcome and the many restrictions we have to deal with as our disease deteriorates. For the most part we can put a brave face on it, we can show up, we can smile, we can push through, we can try to live the best life we can, but it doesn’t mean that it isn’t hard. One of the biggest things that has really helped me has been the genuine love and support I have had and the time my family and friends have taken to understand what it is I go through. Sometimes just a little cuddle, a cup of a tea and an ear to listen is all we really need!

Emma Reed

Thanks to Emma Reed for allowing us share her blog post. If you would like to read more posts from her blog, you can find her on https://www.inspiredbylife.co.uk/

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Hilaria popularly known as Hilary is a kidney disease survivor and a transplant warrior. She first started writing to help deal with the pain and suffering of her journey but it quickly became a path to creating an awareness of BME organ donation. She is very passionate about her campaign as she felt that if people knew and could identify with her suffering, it will help people to change their minds and become organ donors.

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