Recently I participated in this season’s second Joint Decisions web chat, and had the great experience of being with Eduardo Flores, aka RA Guy, where he talked about managing the mental and emotional challenges of living with rheumatoid arthritis.
Eduardo told his story about being diagnosed with and living with RA with his characteristic grace and humor and wisdom. He shared his philosophy and his “best practices” for mental wellness.
One of the ideas he introduced was to think about the five stages of grief, popularized many years ago by Elizabeth Kubler- Ross.
She worked with cancer patients who were dying, and saw that they and their caregivers often went through identifiable periods marked by denial, anger, bargaining, depression and acceptance. Her model has been used and adapted for many situations that have loss and change, not just ones that involve terminal illness.
I want to bring up two things that Eduardo emphasized as concerns these stages.
The first is that these stages are not linear, nor are they a neat progression. One can be in a state of anger for a long time. You can resolve your sense of anger, and feel you have “moved on”, and then something can happen that brings it up in a fresh way, and you find yourself working through anger again, from another perspective.
This is not a “failure” to have done the work, it is a reflection that all these mental and emotional places are on a spiral, and we re-visit them as life happens to us.
It works the same way with acceptance. Acceptance is tricky – you want to be able to be grounded in reality that this disease is now part of your life. Yet you don’t want to make it your life. How do you navigate being reality-based, and yet not completely identified with the pain or the illness? Additionally, acceptance is one of the most elusive stages. It comes and goes. It is a place we return to over and over again, depending on what is going on in our lives.
And it won’t look the same from person to person.
One of my clients expresses her acceptance by never ever stopping her quest to find better treatments. She is restless when she is doing the same thing for a long time. She tries new exercises, new medications, alternative healthcare ideas, and stays current with all the conventional medical advances. For her, this is about accepting she has a chronic illness and doing everything she can to live well with it.
Another client expresses his acceptance by choosing not to work on his body. He takes his medicine, schedules his appointments for follow up, and lives his life doing other things.
One of the most challenging aspects of acceptance is living with the lack of control.
That roller coaster of not being able to predict good days or bad days, of living with pain we can’t always manage, and not being able to make choices we thought we could, can knock us right out of any acceptance into anger or depression, or full-on grief.
But what I took from Eduardo’s words, is the hope that over time you can return again to a place of calm and allowing what is. You can move back on the spiral to be able to manage.
Well-being doesn’t mean that we feel the same every day. It suggests that even on the worst days we try to remember that we will pass out of this stage too, and that we have resources to help us.
I encourage you to listen to Eduardo’s story when the web chat is posted on the Joints Decisions website. His willingness to share so openly is a resource to draw on for your own well-being.
