Dancing in the storm

With a chronic illness, you walk every day on the border between the past and the future.

For those who suffer from or care for people with a chronic illness, the images of an assumed future and the world are ruthlessly undermined. It is a unique existential pain to mourn the loss of the envisioned future while striving for an unknown future with courage, faith, and hope.

A person with a chronic illness permanently walks on a dividing line between the past and the future. If he looks back, he can see what the disease has taken or forced him to give up. Looking ahead, he sees nothing quite clearly. There is no going back to the past, and the future is uncertain. And now I hear you think the future is uncertain for everyone, and no one can go back to the past. Yes, absolutely, and I don’t want to take anything away from that. I want to sketch a different perspective.

The loss of function, exacerbated by the loss of status or identity, can diminish self-esteem and break body image, sparking anxiety and depression. Because chronic illness can take away many of the characteristics that make up identity while causing loss of livelihood, the aggregate of the losses can be potentially enormous. Since these losses are not linked to one event but are frequent and repetitive, the person can live with intense grief. But the most prominent part, I think, is fear.

Depending on the nature of the illness, much can be taken from a person by the disease: career, income, self-reliance, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, security (I’m not limiting on this) In the most extreme cases, one disease can cause all these losses, sometimes over and over and in many ways.
A loss of a body function or body part can lead to a reduced ability to perform tasks, hobbies, or other (daily) activities. Still, it can also derail your career or prevent the fulfillment of a dream. This can worsen if the disease diminishes people’s ability to participate in activities they consider essential to their lives. For example, an athlete’s chronic illness can put aside a promising future for which he has trained since childhood. A person who expressed himself through the visual arts may experience a devastating feeling due to severe visual impairment.

The power of language
Well-meaning comments from friends, family, co-workers, or health care professionals can sometimes make things more complicated by saying, “it could have been worse,” or saying, “you look good.” These statements seem to nullify a person’s physical and emotional suffering. Of course, positive thinking is critical, but it is essential not to make such statements a point of view. Indeed, articulating such a point of view is useless and deprives the person of the right to feel sad. In short, language is crucial.

What can the other do?
It helps to listen to the other and help him to learn to accept the loss and/or limitation and help him or her turn the experience into something livable and bearable. Help not focus on what was there, but on what may still be there.

Dancing in the storm
Writing, sharing, and acting out (in whatever form) can help you not curse the situation you find yourself in but instead teach you how to dance in the storm.

Painting: Dancing Underwater – Marco Ortolan