Health & Wellbeing

Pain Points

Lesson 2 Module 2

The first question we should look at is, why do people feel like victims when diagnosed with kidney disease. Maybe it's because, like many chronic illness's, kidney disease can strike anyone, arbitrarily. To the vast majority of people, it is through no fault of their own they have kidney disease. This can be very hard to take and throws up the question, WHY ME?

Looking at my own history, having kidney failure at 20 was never going to be easy, especially as a very active sportsman studying for a degree in sports. Looking back I can now see I went through what is known as the Kubler- Ross, Stages of Change model. This refers to the emotional changes you go through upon receiving bad news. When you learn that you have a terminal illness, you often feel similarly in relation to being told you have a long-term illness, like kidney disease. These stages can include denial, anger, bargaining, depression, and acceptance. Acceptance is the final result. You may go through some or all of the other emotions, but reaching acceptance is what is important.

(homer simpson clip…?

Reflecting on my experiences with kidney disease, reaching acceptance was a very important outlook in relation to recovery and dealing with kidney disease. It is "Ground Zero", it's not a step in the ladder it's the foundation you place your ladder on.

Understanding kidney disease and how it can affect your life is a good place to start.

Physically, it's a long list that includes feeling generally unwell, maybe experiencing weight loss and poor appetite, decrease in energy, tiredness, headaches, increased need to go to the toilet and possible blood in the urine. You may experience a shortness of breath, water retention, itchy skin.

If you need to start dialysis then the list of physical challenges increases greatly.

I experienced unaccountable tiredness (I was a sports student in college! I should not have been tired). I also experienced severe headaches and vision problems. This, it turned out, was due to my blood pressure being so high it was damaging my eyesight and causing headaches. It was an optician, not a doctor, that sent me to A&E. I did not know your kidneys have a role in maintaining blood pressure and the many side effects of high blood pressure. It turned out, if left much longer, I may have suffered a stroke!

It is very understandable to be struck down in fear at the words "kidney failure" and "kidney disease", more so because there is very rarely a cure, only differing forms of treatment. In some cases you can push dialysis and kidney failure into the future with treatment and changes in diet and you should obviously do all you can, if you are diagnosed early.

Initially though, when diagnosed, you begin to project your mind to physical disease, discomfort and pain. You think of hospitals, uncertainty, and a future unplanned and unprepared for.

The big point I wish to make is that once you are diagnosed your health care team will give you the full force of medicine to treat your illness (to treat your physical body). The reality however is that the side effects of kidney disease are not just physical. The disease is physical, but the challenges and difficulties you will experience are not all physical.

You need to think about the challenge that awaits your loved ones, for example, who will join you in firstly, trying to cope, then the search to find answers and the future life facing you. Your family and friends will all have to live with the consequences, alongside you.

You think of the economic implications. Will you be able to sustain a full-time career or cover the extra costs that may occur due to hospital visits, surgeries, treatments, medicines, a change in lifestyle?

Then you can look at the social effects of the illness and its limitations. We are speaking not just in relation to food and drink but to your sporting, social, and leisure activities. Can you continue doing all the things you previously loved to do?

All this, not to mention your own internal mental and emotional battles in relation to coming to terms with living with a serious, long-term illness!

If you can feel a tension, even thinking about these issues, that's good, because you should. Kidney disease is a challenge, not just to one's health but to your overall quality of life.

Now that we've looked at some of the “pain Points”, and it is important to view them and consider them, we turn the page to a more positive note.

The good news is that the challenges are not insurmountable.

Physically; Treatment for kidney disease and kidney failure is constantly evolving, it is efficient, and most importantly, it is effective! The health care teams of today, from the hospital teams to the research organisations and pharmaceutical industries, are constantly improving the treatments and outcomes for those living with chronic kidney disease.

And that's brilliant, it's just unfortunate, in relation to the mental, emotional, social and economical implications of kidney disease, people are often left to figure things out on their own.

What I am saying is that maintaining or returning to good health involves more than medical matters. Your healthcare team will do everything they can for you, to treat the disease. However you need to understand that the pain in kidney disease is more than physical. It affects your whole life and until you address all the issues, you cannot find acceptance and move past the pain of having kidney disease.

For me, mindset and attitude are the elements that can make a difference, especially how you view your health. Are you a sick person suffering from kidney disease or a healthy person with a kidney issue? Your viewpoints can shape your experience and your health.

Workbook: At whatever stage of kidney disease you are currently in, think about the long term consequences to your health and quality of life. Write down some of the challenges you see in relation to physical, mental, emotional, relationships, work, social life