I know I don’t look Sick but……

Posted: June 22, 2015 in Health and kidney related
Tags: ,

I know I don’t look Sick but…… I have a chronic illness.

I bet when most people hear the phrase “chronic illness,” it likely conjures up images of an old granny in a nursing home.

The thing is, chronic illness isn’t limited to just the elderly. Chronic Disease is defined as “a long-lasting condition that can be controlled but not cured,” and includes things like arthritis, kidney disease, depression, lupus, multiple sclerosis, diabetes, inflammatory bowel diseases and many more. Many of these illnesses are also invisible, meaning that you can’t tell someone has one unless they explicitly tell you so.

As you know I have stage 5 Chronic kidney disease (also known as end stage kidney failure) and am waiting for a kidney transplant. With Chronic kidney disease there is a progressive loss in renal function over a period of months or years until the kidneys do not work any more (and you die). Chronic kidney disease is common, affecting over 3 million people in the UK. However, it can go undetected as people often have no symptoms until stage 4 or 5.   I probably had it many years before I was diagnosed.  I only went to the Doctors because my lovely wife persuaded me as I was getting more and more tired all the time and feeling generally unwell.

Kidneys are essential to our health. They get rid of excess water and toxins, regulate blood pressure and make red blood cells. They filter your blood up to 30 times a day. They help keep your bones strong and healthy by activating vitamin D. And they are responsible for keeping the components of your blood in balance.

Every year over 55,000 people in the UK are being treated for end stage kidney failure.  Around 6,000 people are waiting for a kidney and less than 3,000 transplants are carried out each year with one person dying every day in the UK waiting for a kidney.  As I have mentioned before there is no magic cure, there are just different ways of living/coping with it.

The symptoms can vary wildly from person to person.

For me.  I feel exhausted all the time. It is really hard to describe how tired and exhausted I feel. But its like living with an intense deep exhaustion that makes every movement feel like I am walking at the bottom of the ocean with a huge ten ton weight on top of me. And it doesn’t matter if I have had 3 or 10 hours of sleep I feel the same.

When the weather is cold I suffer from cold intolerance and find it very difficult to keep myself warm. My legs often become week and feel like jelly. My bones ache all over. I often feel nausea and have headaches. My skin itches often. The simplest tasks take me 5 times longer and take 5 times as much more energy than a “normal” person.

I have little patience and suffer from mood swings, paranoia and intense depression. In turn I suffer really badly from stress.  I feel insecure and I get stressed and worried really easily. And if I do get stressed or worried about anything my body rebels and my other symptoms flare up even worse.

I find it very difficult to concentrate on anything and as a result my memory suffers drastically. And so I get confused and frustrated very easily. My mind feels very fuzzy and foggy. People with Chronic Kidney Disease usually call this having a “foggy brain”.

I can be ok for three hours one moment and curled up in my bed nauseated, dizzy and weak for the next six hours. I can be on the go for 1 or 2 days and lying in a bed the week after. My body rebels without warning.

As you may know I am trying to something positive and I am attempting 45 challenges in order to raise awareness for organ donation and to raise money for the British Kidney Patient Association (See http://www.kidney45challenge.com). And as you can imagine this is not easy for me to do. Because of the reasons above I find it incredibly difficult.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. I don’t have that luxury. I read a blog recently which explains what I mean, it’s called the spoon theory. It’s a simple analogy to explain what it’s like to live with a chronic illness or disability.

The basic premise is that when you have a chronic illness or disability, you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, making tea, showering, eating, all those little things — you lose a spoon. When you run out of spoons, that’s it, the day’s done and you can’t physically do any more.  Lets say I start each day with 10 spoons. Then you can understand that very quickly I can run out of spoons and not be able to do anything else as I am spent. It’s an analogy that demonstrates the loss of control someone experiences when they’re living with a chronic condition. Read the full explanation in the blog below.


Another way of explaining it is each day is like the day you had the worst hangover of your life. After you’ve gotten over the initial sickness and killer headache, you’ve had some breakfast and feel a bit better. However for the rest of the day, you feel not quite right, all fuzzy and sleepy and not very with it. Now imagine having that every day from when you wake up to when you go to sleep, and that’s as good as your days get.

I hate it. I hate being ill all the time. It is really hard being tired and ill all the time and this gets me down. Especially when I can’t play with 7 year old son because I am too tired. It breaks my heart every time I say no I can’t play with him. My wife and son do try their best to be supportive but it can’t be easy for them either watching me go through this.

People with Chronic kidney disease usually have to take a concoction of drugs to help our body cope with the various conditions that we suffer from because the kidneys can not maintain the blood chemistry.  I am no different, I take numerous medications because I also have Hypokalaemia, impaired glucose tolerance, Hypocitraturia, Secondary Hyperparathyroidism and Dyslipidemia. And on top of the different medications I have to take there is the endless blood tests, other tests and hospital visits that I have to endure to remain active on the Transplant List.

On top of this is the hassle of having deal with others who do not believe you are ill. Dealing with somebody who does not believe your are ill is not something that anyone should have to deal with on top of the stress of their illness. So how should you deal with somebody that doesn’t believe that you are sick.  Here are some ways that I have come across to deal with these people in your life that question your illness.

1. Think of yourself.

This is a simple tip. Think of yourself. When you cancel or don’t do much as you use to, do so with the utmost love for yourself and with self-care. Lose the guilt and especially lose the worry of what others will think when you can not or are unable to do things because of your illness. Set expectations for yourself, and other people, that are realistic. Be upfront with your friends and family that because your health is unpredictable, you typically may not be able to do some activities.

2. Be confident in talking about your illness.

When someone says, “You don’t even look sick,” you should respond kindly: “Thank you, but I am and it’s a daily challenge. If you want to learn more about my health condition, please just ask’.” Don’t waste valuable time and effort convincing them otherwise. And don’t waste energy defending or justifying yourself.

3. Don’t Waste energy Getting Mad

Before getting mad at those that question you, ask yourself if you have thoroughly explained what you’re going through. If people continue to question you, then it is best to distance yourself or remove them from your life.

4. Surround yourself with positive people.

Instead, surrounding yourself with positive people who will help you cope with your illness. Joining a support group is also going to aid in buoying you.

Unfortunately I have been the recipient of this attitude from my brother. He claimed that I was exaggerating my condition and being melodramatic when I told him about my illness and he said  “you will be ok as your condition isn’t life threatening as you can get dialysis to make you better”.  He said a lot of other hurtful things to me which I wont go into here. He will never comprehend what I (and my family) have to go through or understand how hurt he made me feel. He just did not know how hard it is for somebody, both physically and emotionally, to live with a chronic illness. I tried to explain my situation to the best of my ability and that dialysis was not a cure but he refused to listen. He just didn’t know what all the fuss was about. Instead he took advantage of my weakened/confused state and left me depressed, frustrated, sad and even guilty that I had this condition. I did not even get any support from him for me attempting the kidney45challenge and he even used that against me to attack me further. But I didn’t want his pity I just wanted respect and his understanding of my circumstances. So I have now removed him from my life as you just don’t expect that sort of betrayal from a family member. But maybe one day if he has the maturity and humility to apologise to me I may let him back into my life, I don’t know. Anyway, I wont say any more on the matter, it’s not worth the stress.

My life is better and more positive without an ignorant negative judgmental poison influencing and upsetting me. I just do not need the added stress of dealing with a selfish individual who refuses to believe that I suffer from a chronic illness and refuses to listen to me.  Unfortunately, I am not alone as people with chronic illness have had to face the same as me. And as a result they lose friends and family because of this. It’s very sad reading about the various stories on social media. There are number of cases where family members have turned their back on the person with chronic kidney disease because they say that their disease is an embarrassment to the family. Another example was a partner of 15 years who walked out saying he did not want to live with an invalid. And there is the problem of friends backing off because of fear of being called upon to help the ill person. And so as a result it can be very lonely adjusting to life living with a chronic illness.

But the behaviour of strangers can be just as bad. Although this has not happened to me, yet! I have heard of people with chronic conditions parking in a disabled spot (because quite rightly they have a blue badge) having to put up with evil stares, verbal abuse and arguments by other persons because they don’t think anything is wrong with them. For example there was a case where a kidney patient was at the hospital seeing his kidney specialist when an old lady asked them why a fit man like him was parking in a space for people with a serious illness and she said she bet he was the sort who parked in disabled bays!! Another example is of a mother with a child with a chronic condition having an argument with an elderly person because they were disputing the fact that she had parked in a disabled spot in a supermarket car park.

I could go on and on with different examples as it very common. Especially from the elderly who think that it is only their “right” to have blue badge and be able to park in a disabled space. You would have thought that some people should know better but again some people judge people by what they see. In this instance there is not a lot you can do except smile, calmly explain you have a chronic condition (using step 1 above) and continue on your way. Having an argument is more hassle than its worth.

Doctors, nurses and health professionals can be just as bad due to their ignorance of chronic conditions. Some just do not understand the ramifications of chronic illnesses. And there is the indignity of facing bureaucratic medical professionals when trying to get financial assistance from the government. The hurdles that people with chronic conditions have to go through when trying to get PIP (Personal Independence Payment) or ESA (Employment and Support Allowance) is mind-boggling and soul-destroying. I have heard of sufferers with chronic conditions being turned down because the medical professionals who have examined them have found them ‘fit for work’ as they have ignored everything the patient has told them because they look healthy.

It’s really hard living with an invisible illness because you often don’t look sick and it is hard describing what you are going through. That’s why chronic illnesses are often referred to as an invisible illness. I hear it all the time when people say to me  “but you don’t look sick” or “you look really well” but little do they realise how I am feeling inside.

The other day I was speaking to somebody whose husband had the same condition as me and he was on dialysis. He was in a “worse condition” than me and she said that even though her husband was extremely sick he still looked well on the outside. And this is common amongst people with chronic illness. You just don’t what is going on beneath the surface.

And since many chronic diseases don’t have a cure this is something that person has to live with forever. So if you meet some body with a chronic illness. Please don’t be ignorant and call your friend or family member a hypochondriac or, worse, imply that they’re imagining or making up their symptoms for attention. And if you see somebody park in a disabled spot but they don’t look disabled, don’t judge them and please don’t assume that some one is ok just because they don’t look ill. Their illness is a very real thing. As I said before we don’t want pity, we just want respect and understanding of our circumstances.

And for those that have been the recipient of this attitude, don’t blame yourself. It’s actually their ignorance and their problem not yours. Think positive and follow my tips. As some people will never understand.

This blog was written to complete challenge 18 from kidney45challenge. Challenge 18 was to write a blog about my condition and share it online with as many people as possible. So please share it if you can.

Thank you for reading and have a nice day :).

  1. Rebecca Nichols says:

    You’re really brave, Darren. And this is a very important thing to talk about. Keep your chin up 🙂

  2. cmsaunders says:

    Sorry to read of your illness, mate. I wish you all the best with your challenges. Eye of the Tiger! 😉

  3. […] I also read this blog here.  It is a long read but towards the end the chap describes kidney failure to a tee. […]

  4. […] I don’t think I ever got over being stabbed in the back by him or understand why he did it (but that’s another story), which I guess has torn me up […]

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