Mapping disease: The phases of living with a chronic illness
By Savina Akoumianaki
It is important to understand that no two chronic illnesses are the same and no two patients are the same. Starting with this on our minds we can examine some aspects about dealing with a chronic illness. Let’s go on a journey.
First destination: “Crisis Mountain”
The journey starts with a difficult path. For many people suffering from a chronic illness this phase is the hardest. The diagnosis itself is a trauma with many components. With the diagnosis of disease, the sufferer is faced with a future that is uncertain and a sense of loss of control. It is an initial shock and the patient may feel that he/she is somehow not involved – they might not believe that the diagnosis is actually addressed to them. If so, many thoughts come to mind. The individual is confronted with a change in the status of his/her life on many levels. It is something that they haven’t experienced before. Even if some of them have had close friends or family members who have dealt with a chronic illness, it is different when such a disease knocks on your own door. Maybe that is why many patients have this sense that “no one understands me”, which may be true. It’s actually better for them if others do not say they understand when they really don’t. Other life events – even if they may seem similar to some – may not be so relevant for patients who are dealing with their own unique problems.
Returning to the road to “Crisis Mountain”, it is normal for patients to try to solve the problem of their disease. During these attempts they may seek many different opinions, diagnoses or treatments. This is due to the denial that the patients feel. It is common to say or think, “this can’t happen to me” or “this isn’t happening to me”. A chronic illness – apart from all the bodily aspects that it involves – means losing control of your life. Let’s be honest: even a little change in our plans can make us angry. It has happened to everyone at some time, right? Now imagine what it means when a big change like a chronic illness comes. The way the diagnosis is announced is very important and accompanies the patient throughout the course of treatment of the disease.
Second destination: “Stabilization Bridge”
During this phase, patients accept their illness because they live it by experiencing their symptoms on a daily basis. This of course doesn’t mean they won’t return to the crisis stage, however, especially after their health temporarily improves, making them think that maybe in their case everything will be better. When the illness comes back with more aggressive symptoms, the patient experiences even more anger. They can feel like, “How stupid I was, thinking that it will be different with me” or “I won’t be able to beat this illness”. These thoughts are not only because of the chronic illness itself but also due to the way the person feels. They start to feel depressed and too weak to do anything. They may fear that they will never recover. This leads to a life with no plans. “Why should I have any plans if I’m going to die?” some may think. This is also because they don’t know enough about the illness. In the next phase when they will have learned more about their illness, this thought will be replaced with more realistic thoughts like “OK, I know how to live with my illness”. As you can see stability is not so easily achieved. People may lose their faith in their ability to manage. They may give up. This is why psychological support, a supportive environment or an expert team is so important for patients to start to change their perceptions about the illness and life – not how to change the situation, but how to live with it.
Third destination: “Resolution Village”
In this phase, the patient gradually accepts to live their new life. They learn more about the illness but also about themselves and about how the others see their illness. This education will provide them with hope and a feeling of control. The illness will no longer be a “faceless monster”, but a situation with symptoms that the person can control, recognize and live with. This can bring up many questions and fears, but also feelings like acceptance and psychological power. Knowing about a chronic illness, means knowing you will no longer be able to have the same personal, social or professional life as before. This does not mean “no life”, only a different life. For example, patients may be able to go to the same places as before, just not for as long as they used to or they may not be able to take part in some activities, (working, eating, drinking) as they previously did. This understanding can lead to feelings of grief – grief over a past life or a life that they planned on. And this can lead to isolation and withdrawal.
With a little help those suffering from a chronic disease can understand that this is just a part of the illness and not their new life. Maybe they can’t eat or drink the same things in the same amounts, but they will find new ways to live. Maybe they can’t exercise in the same way, but they can always find new activities that they’ve never considered before. They might be surprised how much they can enjoy their life again. Support groups are very helpful in this case, not only because they are made up of individuals who suffer from the same (or similar) disease, but also because there are people there to help new members find new activities. Of course relapses can occur and phases of crisis and feelings of anger and depression can resurface – the journey is not easy. But relapses do not mean that any progress made so far has been lost! A relapse can be an opportunity to come back stronger and progress further.
Fourth destination: “Integration Lake”
In this phase individuals try to construct their new life in a way that suits them best. They have already cleaned their mind and their life of things, people or situations that may make them feel worse. Building a supportive environment is one of the main purposes of this phase. They also put the details of their daily life in order. From now on their illness will be just an aspect of their new life. They have already understood and provided the illness with the space it deserves – no more, no less. They are not the illness, but a person who is discovering through their experiences. This person will find their “meaning of life” and set new goals. Many patients in this phase have said that when they look back on their lives before the illness they see their former selves as “small” and feel that they have reached a “higher level”. What they mean is that they used to become stressed due to little, unimportant things and now they feel much stronger. They want to live as best as they can. This may sound strange, but some people have said that they feel much better about themselves.
Do not forget…
“As you set out for Ithaka
hope the voyage is a long one,
full of adventure, full of discovery…
And if you find her poor, Ithaka won’t have fooled you.
Wise as you will have become, so full of experience,
you will have understood by then what these Ithakas mean”
–from Ithaca by C.P. Cavafy