What a weekend! Tiffany and I were thrilled to attend and present at the first CURED conference that focuses on finding a cure for Eosinophilic Gastrointestinal Disorders (EGIDs). As we heard from various speakers and families that were there, we were reminded of the incredible need for patients and families facing chronic illness to have mental and emotional support. It was a time of connecting with others who are just as passionate and dedicated to these patients, and a time to be inspired.
One thing that struck me is the resiliency that the children and adults with EGIDs are able to have, despite have a chronic illness with vast dietary restrictions. While living in a world that revolves around food, patients with EGIDs have to find ways to make life about other things besides food, and find other ways to connect with those around them. This made me think about the ways that those with chronic illnesses attempt to achieve harmony within themselves and make sense of their experience. Life with a chronic illness isn't easy, and there are periods of time where accepting the diagnosis is much easier than others.
One thing that struck me is the resiliency that the children and adults with EGIDs are able to have, despite have a chronic illness with vast dietary restrictions. While living in a world that revolves around food, patients with EGIDs have to find ways to make life about other things besides food, and find other ways to connect with those around them. This made me think about the ways that those with chronic illnesses attempt to achieve harmony within themselves and make sense of their experience. Life with a chronic illness isn't easy, and there are periods of time where accepting the diagnosis is much easier than others.
As I took a quick look at the research, I came across an article entitled "Achieving harmony with oneself: life with a chronic illness." Here are some enlightening quotes I found in the qualitative study:
- The study shows how there constantly takes place a pendular movement between hope, doubt and hopelessness, between feelings of self-control and feelings of loss of control for a time, and that this movement which entails uncertainty, anxiety, frustration and difficult choices. During this process, the individual experiences a rupture of meaning and after a time perhaps find a new way of living and thereby new meaning in life.
- A person suffering from a chronic illness is shaken to one’s foundations. Their most basic identity with associated social roles is challenged. The learning and adjustment process entail finding oneself again so as to deal with one’s transformed life condition.
- However, doubts can arise and shake the hope, whereby there emerges a drift towards hopelessness and despair. Hopelessness and despair are nor conducive to getting in harmony with oneself, to accustoming oneself and accepting the new life situation.
When I read this study, I was encouraged by the image of a pendulum, swinging between hope and doubt, both parts of the human experience, and both parts of living with a chronic illness. There is permission for both hope and doubt, as with each flare or exacerbation of illness will bring new challenges for the patient to be able to accept. And it reminds me of the great privilege we as therapists have of being able to walk alongside those who have chronic illnesses, to provide a safe space for them to talk about their identity, what they are learning, and how to move forward from a hopeful place. Therapy is a unique venue to growth, and it is a great tool for those who are looking to maximize the life they have, while gleaning lessons from their illness.
Source: Achieving harmony with oneself: life with a chronic illness. Delmar C, BĆøje T, Dylmer D, Forup L, Jakobsen C, MĆøller M, SĆønder H, Pedersen BD. Scand J Caring Sci. 2005 Sep;19(3):204-12.