The stages of chronic illness
I recently started reading You Don’t Look Sick: Living Well With Invisible Chronic Illness. I’m only about 30 pages into it, but I have already found its words to resonate with my own experiences.
The book is written by two people – Joy Selak, who suffers from a number of chronic illness, including interstitial cystitis, and Dr. Steven Overman, one of her medical professionals. Dr. Overman describes four phases of chronic illness (p. 3) which were originally developed by a social worker by the name of Patricia Fennell. Her phases are crisis, stabilization, resolution, and integration. Dr. Overman sums up the phases and Joy’s experiences with them as follows:
Crisis includes the anger, fear, and loss Joy experienced while getting sick. In the second phase, Stabilization, Joy accepted being sick and began to put into action a plan for managing her illness and her life. During Dr. Fennell’s third phase, Resolution, Joy grieved and truly accepted her illness as a part of her life. Finally, Joy began living well as she found value, meaning, and purpose in her new life during the Integration phase.
Something I think is important to mention – even when you get to integration, or “living well,” you still go through periods of anger and grief.
I think I went through the crisis stage fairly quickly, thanks to my previous experience with PCOS. I was diagnosed quickly. I think I moved on to stabilization, but I feel I have been idling there until recently. I think I am starting to move into resolution; I think the utter depression that has weighed on me for the last month or so is grief. I think it interesting that Dr. Overman notes that Joy began her plan of action with regard to her care. Perhaps others, like me, need to grieve before we can truly put that plan of action into motion.
I have described, to friends, my fear of what is at the end of this depression. I have felt like I am stuck in a dark, deep well, and am holding myself up against the walls, trying not to plummet to the bottom. At the bottom, there is a monster I fear. But my arms and legs are getting tired, and I know that I will soon surrender to gravity, and the monster.
I have been thinking about this metaphor, and I think that the monster represents a death of sorts – death of my life as it currently is, or rather life as I wish it still was, life before IC. What will happen after I surrender to gravity is that I will discover my new life, my new self. I think I am terrified of what I will be like; I think I am terrified that I do not have the strength to live this new life and be this new person.
I daresay that those who love and care for me believe that I do have this strength, and will love the new me as much as they love me now – but selfishly, I need to believe this on my own. And in the immortal words of George Harrison, “It’s gonna take time, a whole lot of precious time; it’s gonna take patience and time to do it, to do it, to do it…” Well, you get the point.
