Chronic disease and grief

Svend Andersen has Parkinson’s disease. Based on his personal experiences and his professional background as a Psychologist he shares his thoughts on the grief that follows having a chronic debilitating disease.

________________________________________ When someone contracts a chronic disease, it is necessary to work with grief. The sense of being healthy and having a well-functioning body is lost, along with a loss of parts of one’s identity – at least for a period – maybe a loss of work role, a loss of possibilities regarding certain activities, and partly a loss of the former role in the family.

The difficulty of acceptance, denial, anger Such losses are not easy to digest and one reacts in different ways, sometimes to the astonishment of others. In the beginning, there can be periods denying being ill. You feel sad, you cry, you want to be hugged and let go of the sorrow. You feel anger. Why me? It is unfair. Some feel anger towards the disease, some against the doctor, who does not provide the help expected. You have feelings of guilt and ask yourself questions like “Was it my own fault that I fell ill?” and “Could I have done something differently?” You are fearful of the future and the progression of the disease.

Acceptance Over time – a period ranging from one to ten years – most people reconcile themselves to being different and being in the world in a new way – in some respects more limited than before, in other ways with more opportunities. The more you recognise having a chronic disease, the less you think in terms of being ill/cured and stop daily speculations of what would make one recover. You start accepting being ill and the fact that your life had changed in important areas, and you begin taking care of it. It is a great inner relief letting go of the idea that you will be cured if only you make a great effort. Once you have acknowledged the loss and the new reality and reacted to it with all your feelings and emotions, you feel serenity. Having said the last farewell, you can begin to say the new hello.

New reality Accepting has nothing to do with passive surrender. The phase of acceptance is the phase when you stop trying to change reality to make it fit your expectations and map of reality, and instead consider reality as it is. After that, you adjust creatively to the new reality.Reaching an acceptance of yourself with your new realities often also settles the feelings of loneliness and self-consciousness being with others with the symptoms you have.

Working with grief We as people are fundamentally alone, and we are deeply dependent on one another. To have another person, a fellow being, is important to get through the change and the sorrow. When you are down, you need a person who can be close to you. There is no need for words the mere presence is enough. You need a witness to your life, someone who dares recognize the loss and who will not try to minimize it or redefine it as something else.

Continuous grieving Grief in relation to chronic disease can re-appear several times. When you contract a progressive chronic disease, the progress will come in phases. There will be situations in life when you sense the disease take hold of you again and your symptoms worsen.You may have just got through a period of working with grief and you feel all right again, then you are thrown into new losses and distress. Unlike other cases of grieving, this has no natural ending.

Deeper sorrow When you have gone through the process of readjusting to the new reality and you expect life to go on in a smoother way now, many people experience that the same crisis reappears at a deeper level. Whereas the readjustment process has been about adjusting to life over again, the next issue is who you are now as a person. You begin to ask yourself questions about the meaning of your life. You may realise that you appear to be the sort of person who lives by the rules, without the commitment and the sparkle of a passionate life. You may discover how you dissemble yourself in front of others and present a cultivated image that is often too positive.

The challenge You may realise you are afraid of dealing with the hard aspect of chronic disease, the daily hardships that have come to take a lot of time. Or the state of mind when you cannot be with other people, because your symptoms disturb you so much that they command all your attention. The challenge in this situation is: Do you dare to be who you are, no matter what others say, or will you continue to depend on other people’s opinion and expectations? Grieving a loss is a natural process. Its purpose is to close the door to what is not anymore and to readjust to an ever-changing world with a new reality and new possibilities. And when the grieving process goes well, people often say that they would have preferred to avoid what happened, but that they have on the other hand learned something they now don’t want to be without.

November 2002