No matter if you have a partner or you don’t, if you have children or you don’t, if you are surrounded by many friends or just a few – the battle against chronic disease and terminal illness will have to be fought alone mostly. Like Sisyphus, you are rolling your burden up the hill, but have to watch it going down again. And just like Sisyphus, you can find happiness…
Chronic illness makes you lonesome in so many ways. The symptoms are something you can explain a thousand times, yet you will be the one experiencing them. Being a spoonie is about so much more than just symptoms. It’s about fear, the fear of an uncertain future. About a life which you cannot control, about days which cannot be planned. Delights fail to please you and overwhelming sorrows take a hold on you. It’s about not trusting your own body anymore and getting used to losing hope and strength on a regular basis.
People who are close will be able to listen to you and maybe comfort you by showing you their love. However, they cannot share your unique experience. Other chronic illness patients or cancer warriors might understand you better. Developing a sense of isolation or estrangement cannot be avoided. It will be your body and you against the world, ever so often.
Generally, a patient might be perceived as warrior, survivor or victim. Compared to the benefits of fighting an acute and curable disease, fighting chronic illness or dealing with a terminal diagnosis leaves you with less advantages. By being brave and strong you might get through the day somehow instead of succumbing to the temptations of your bed if you are a spoonie. By fighting hard you might gain a few days or weeks of life, if you are terminally ill.
Fighting a curable disease might be compared to conquering Everest. Tough, but worthwhile. Fighting chronic illness is a Sisyphus task. Albert Camus who wrote the Myth of Sisyphus. Camus describes the whole range of emotions Sisyphus has to deal with. And the happiness he experiences.
In the end, we will always walk alone. This is innately human. All our stories are written by us alone, lived by us alone and they end in solitude as well. Some of the battles we fight will never be won and we know it. But remember that even Sisyphus is able to find happiness. The rock is still rolling, our hearts are still beating and the whole wide world is out there for us to see from the top of the mountain! Go for it!
Illustration / Sisyphus by José de Ribera, Prado Museum, Madrid.