Blessings of a Chronic Disease

By Anmar Labuschagne

Being diagnosed with a chronic disease or condition feels like death, only worse, because you have to keep on living!

There is not one area of your life that is not impacted and affected by having a chronic disease. It is often a very lonely journey. The uncertainty, loss, fear and weakness can really get the better of you. You must learn to cope with your condition and how to support yourself within your new reality.

In this book there is practical advice on how to take back control of your situation, how to mourn the life that the disease has taken away from you and how to rebuild a new one. You will find guidance on how to handle your worst days, and how to celebrate your good ones. It will also teach you to prepare for the bad days, so that they will not completely knock the breath out of you!

Blessings of a Chronic Disease will show that you can live a positive life even while experiencing the challenges of a chronic condition.

• Language: English
• Publisher: Anmar Labuschagne
• Release date: May 3, 2021
• ISBN: 9781005655174

Book preview

Chapter 1

Introduction

"The past is a foreign country: they do things differently there."

LP Hartley’s novel (1953) The Go-Between.

O! How different the past can be! When you get diagnosed with a chronic disease everything changes. There is nothing that is important to you that the disease cannot take away from you. Any person with a chronic condition will tell you how much they have lost and/or had to give up because of their disease. It is hard to accept the fact that your body has changed, and that your life has changed and the future you envisioned, you cannot have. You will need to create a new dream and build a new future. It is an extremely difficult thing to face; all your hopes and dreams seem to dissolve and get reduced to ashes. For a while there, you will have nothing to hope for, nothing to hold on to.

This book is about the understanding that living with a chronic disease is hard. The patient and the family of the patient will need to adapt, and change - A LOT! This book is also about seeing the joy and blessings in your life regardless of the difficulties you face living with a chronic disease. To see how the disease, the treatment and the experiences with people, medical equipment and treatments and many others can do to add value to your life, you need to keep an open mind and shift your focus.

There will come a time, a stage, when you understand that this disease does not have to be a curse, it can be a blessing in your life, and it can add value. It can make your life better. It can make you a better person. And it can make you be a blessing to others if you will only let it and use the opportunities.

It is not all that relevant which battle is yours. It can be depression, bipolar mood disorder, anxiety disorder, and other kind of mental illness; myalgic encephalomyelitis (Chronic Fatigue Syndrome / Yuppie Flu); any kind of eating disorder, paralysis, dystonia, diabetes, high blood pressure, Syndrome X, heart condition, fibromyalgia, HIV/Aids, rheumatoid arthritis, ischemic heart disease, Alzheimer’s disease or anything else; the list of chronic conditions is endless.

This is exactly the reason why it is so important to learn to live positively with the disease and the circumstances surrounding it.

For most individuals, a chronic disease is a burden and a cross to bear. They experience it as a huge curse in their lives and battle to find anything positive about it. This thinking only makes the situation worse. It causes all kinds of psychological problems, stress and depression, anxiety and heartache. More so than is necessary in addition to the symptoms the patient already experiences. The individual with a chronic disease has enough to cope with and be concerned about. They don’t need to be their own enemy; they will have enough haters and judgement from others because of the illness.

Unfortunately, the loved ones and acquaintances of the patient will not always draw the line between the individual and the disease. Often, they will avoid the patient because they do not know how to deal with the new reality, nor how to manage and deal with the symptoms of the patient. Mostly they do not understand the illness or condition and therefore they become impatient and judgemental. They do not want to talk to the patient about the disease because they can sense that it is hard for the patient or they just do not know what to say, thus they would much rather just ignore the topic than have to cope with the sadness of the diagnosed individual.

People with a chronic disease are good people, often very strong people, much more than they receive credit for being. Sometimes they seem weak to others, but no one will ever know their inner battles and fears. In the beginning, when the diagnosis is made, and the patient is learning about the disease, they try to explain to others, they try to share their knowledge. Soon enough they learn that people in general are very insensitive to another’s illness and troubles. They are kind and supportive for a little while and then expect it to get better and disappear. But what if the illness is not the kind that does get better and disappear? Then, in time, the patient will stop talking and stop sharing. They pretend that everything is okay, or avoid anybody that would judge or be rude, at a huge cost to their own quality of life. They will definitely stop trying to make people understand, because it hurts too much emotionally when they get shut down verbally and get negative feedback.

Whatever the illness is – the disease, the chronic condition – that you have and whatever you choose to call it at the moment in order to cope with it, it is a part of you and of your life, it will be a part of your package for a long time, possibly forever. You might as well learn to have a good life despite this curveball and accompanying challenges. Please understand that I am not making light of having a chronic condition, it is a terribly hard thing to accept and to live with. It is impossible to begin to understand if you have not had to cope with having your health taken away. When a person loses his or her health, it is very easy to lose everything; just thinking positive thoughts will not change that, but it will make the burden easier to bear.

I will try to explain a chronic condition as follows: Visualise a chronic disease as a wild animal (I like the wild dog; it is a good symbol for me). You can choose the animal that you feel represents your condition. The animal will destroy you if you let it (by killing you or consuming you alive, emotions and bitterness will do this). If you let it run wild without controlling it, it will take over your life completely (sometimes they bite and cause pain and distress). When you learn how to tame this animal, and find ways to control it, it will lie close by and be part of your life while not causing much hurt or harm. It can have a more peaceful interaction and relationship with you.

You see? There will always be interaction with your disease, you cannot ignore it, otherwise it becomes angry and out of control. When this happens, it causes all kinds of troubles and even threatens your whole existence and your life. You can accept and tame your animal; you cannot make it go away; it will always be close by. If you take proper care of the animal, and give it the time and attention it needs, the impact on your life and existence will be much, much less.

The sooner you accept that you need to learn how to tame the condition and live with it, the sooner you will find peace and live a better life.

Any situation and any circumstance has the potential to be a blessing or a curse, the choice is ours. That is the magic of being human! That is what adds magic to life. We always have a choice about how we want to react to an event or situation. You are not expected to be overjoyed about having this condition, but it will be much easier to deal with setbacks when you have a good attitude about it. Many bad things will happen in life, we cannot escape that reality. Whether it be a health issue, a financial issue, a relationship issue, or whatever it may be, the difficult times will come. But good times will come too.

This condition has the potential to make your life better if you let it. By embracing it, you will have more meaningful relationships, better health within the boundaries and considering the limitations of your condition (it really and truly is possible) a better body and you may even look better (and possibly younger) than your peers.

I understand that it seems impossible. It contradicts everything we know and what we are conditioned to believe about chronic disease and illness. We believe it is supposed to be hard, it’s supposed to make your life and the lives of those around you miserable. It’s supposed to reduce the quality of your life.

Now I pose the question: Why? Why do you need to be miserable? To make people believe that you are ill? Because you are expected to feel bad about yourself? You did not do anything wrong. People get ill, the body fails for many reasons; it happens to people regardless of their ethnicity, age, body size and shape, religion, financial status or any other factor. Even with a chronic condition, you do not have to make excuses for having fun sometimes, for enjoying life or for feeling happy.

Why can the disease or illness not make your life better?

With any kind of chronic condition comes certain standard medical advice:

Adhere to a good diet for your illness

Eat fruit and vegetables, limit red meat and refined carbohydrates

Control your weight

Drink enough water

Get some form of exercise

Get proper sleep

Limit the use of alcohol

Quit the use of tobacco and other drugs

Consider for a moment what the basic things are that you can gain from the above advice. The new eating and exercise plan (it does not have to be a radical plan) will lead to weight loss. You may have less inflammation in the body, and your body can recover faster from infection and inflammation. You most probably will have more energy and vitality. Another positive is that you will be taking better care of your finances since you are not eating out or getting take-aways and junk food as often.

More benefits include better relationships. Since you have a better attitude about life, people will enjoy spending time with you. When dealing with your disease, you will meet many people, some nicer than others. Often, unfortunately, it may not be a good experience and you will have to keep calm and friendly, a good quality to develop. In no way am I suggesting you must be a doormat or a punching bag, but it helps situations to keep your wits about you.

You deal with many doctors and medical personnel at various medical institutions, from the admin to the medical specialists. You are almost guaranteed to have dealings with medical aid funders and insurance companies. You will often deal with managers and colleagues who do not understand the difficulties you face and are irritated with your absence or perceived weakness. Family members and friends may be less understanding and unsympathetic than you need them to be and make demands that you cannot cope with. All this will develop your skills to deal with people, situations and finances.

Remember that every person is unique, and every person’s situation and circumstance is as unique as they are. Considering that we are each are unique and wonderful in our own way, we will necessarily experience our chronic condition in an individual and unique way. Even when we meet the diagnostic criteria of a certain disease and we experience the same symptoms as other patients with a similar diagnosis, the way we experience and interpret our condition and the impact it has on our lives differs from any other person with a similar disease.

Misconceptions about Chronic Disease:

A person who looks well feels great. The way a person looks is not an accurate reflection of how they feel physically. They become exceptionally good at hiding symptoms.

Chronic disease affects more men than women, or more women than men. The diseases affect both genders equally.

Rest will help the patient to get well. Enough rest is not a guarantee that the person will feel better or be able to attend a function or an event.

Mindfulness and meditation are the answer. Stress reduction techniques are not a cure for illness and pain. They will help the person deal with the disease and manage it a bit better though.

When a patient has fun, they must be cured. Chronically ill patients can have fun too. It doesn’t mean they are cured, and they probably will pay the price in physical symptoms later.

To be home all day is the ideal lifestyle. When you are chronically ill, it is not a holiday. It is boring and depressing. All you have to think about all day is your illness and what you cannot do.

Chronic illness only happens in first world countries. Chronic noncommunicable diseases account for half the diseases and about 80% of the deaths in poorer countries (Carmen).

Chronic illness affects only the elderly. Chronic disease can affect any person from infancy till old age.

Chronic illnesses are self-inflicted. While lifestyle plays a role in a small number of chronic illnesses, most are not preventable and are not a result of anything the patient did or didn’t do.

Thoughts

What kind of thoughts now, do you carry

In your travels day by day

Are they bright and lofty visions,

Or neglected, gone astray?

Matters not how great in fancy,

Or what deeds of skill you’ve wrought;

Man, though high may be his station,

Is no better than his thoughts.

Catch your thoughts and hold them tightly,

Let each one an honor be;

Purge them, scourge them, burnish brightly,

Then in love set each one free.

Myra Viola Wilds (1915)

Chapter 2

Get to Know Your Condition

When you (or a family member in your care) are being diagnosed with a chronic condition, the shock can be severe and debilitating. You feel distressed and unsure, amongst about a million other feelings and questions that arise (see Chapter 4 and Chapter 11 for more information on these feelings and emotions and how to cope with them). After a while, which may be a few days or a couple of weeks, the initial shock will fade, and you will come to terms with the news. This is when you need to be strong and get down and busy with making some plans. A tailored plan for the financial, physical, social and other implications of having a chronic illness or a debilitating chronic mental illness is essential in coping with it.

What do you need to do?

Learn about the condition!

Your first task is to learn as much as you can about the illness. See what the symptoms are that you can expect, read up on the natural progression of the illness and what you can expect to happen in your body and mind. Read up on the illness and find articles and books about people with the disease and how they managed it.

Do not, however, believe everything you read: your condition will not progress in the same way as another patient’s condition. Just look for common