Once, one of my chronically ill clients said to me, “My goal is no longer to get better; it’s to learn how to live well the way I am.” This was a big moment.
In the first years of a chronic illness, people spend a lot of time working with doctors, trying to figure out what is wrong with them and how to understand it and fix it. This makes sense. Sometimes when we get sick, medicine can help us get better. On the other hand, sometimes what has happened is that our body and our life has changed forever. Five years into her illness, one of my clients said, “I can’t believe that this is the life I have now. It’s like I fell down the rabbit hole and entered a whole new world that doesn’t even seem real.”
When people become ill, they are faced with a cascade of changes and losses that can be utterly overwhelming and very difficult to face. They may lose body parts and functionality, friends, career, their old lifestyle, financial and social status, independence and mobility, a sense of efficacy. Even writing this list feels overwhelming.
On the bright side, once a chronically ill person gets to the point of wanting “to learn to live well the way I am,” he/she is on the way to less suffering, anguish, unrest, and self-loathing, and more authentic relationships and life satisfaction, and a greater sense of contribution and meaning.
Some things from a chronically ill person’s “old life” still remain–like certain friends and family members who have had the guts to stick around and certain core personality characteristics–but a lot of the task of the chronically ill person adjusting to his/her new situation truly ends up being a process of saying, “okay, it appears that I now live in this completely different world down the rabbit hole; let me figure out how best to get on in this strange new world.”
If you find yourself in this position, there will be no denying everything you have lost. It can be heartbreaking acknowledging it all.
On the other hand, once you learn how to live in Wonderland, you may find that you can understand things, enjoy things, and do things that you simply wouldn’t have had any idea about in your old life above ground.