What Rehabilitation Looks Like When You're Chronically Ill
When we find our abilities, independence and self-reliance diminished by the effects of a chronic condition, pain and/or disability, we look for assistance and ways to retain a measure of control and function. It can be however, that due to the nature of the condition and its progression, options are very limited. When that happens, a different kind of rehabilitation may have to be found.
In medical terms, rehabilitation is defined as: the action of restoring someone to health or normal life through training and therapy after illness; to reach and maintain optimal physical, sensory, intellectual and social functional levels; to restore to dignity.
In a chronic illness however, the options to restore health and normal life can
be very limited, and functional levels can only be strived for within the context of your condition. In those efforts, most rehabilitation models and strategies deal very comprehensively with issues such as:
- social participation
- developing skills
- medical interventions
- obtaining independence
- setting goals
- setting up support structures
The strength of rehabilitation programs lies in their proactive approach, in their measured targets, their appeal for self-participation and in providing structure, focus and direction, preventing you from getting stuck in resignation, doubt and hopelessness.
It has been found that notwithstanding the support and effectiveness of interventive rehabilitation programs, what remains often neglected and ignored is the area of our emotional life. The deep-reaching, fundamental and possibly devastating emotional/psychological effects of contracting and living with a chronic illness, pain and/or disability are still underestimated.
From all my years of working with patients and clients in a variety of settings, as well as from years of my own struggles with impaired ability and chronic pain due to lower spinal damage, I have learned that there is no honor in living with a chronic condition.
Week by week, month by month and year after year we need equal, if not more courage, commitment and resilience than say, a high-performance athlete, an explorer who sets off across the dark waters to an unknown world or an astronaut stepping into the terrifying void of space.
Each moment of our lives we experience ourselves in the realm that separates what we want from what we can. Every day we encounter feelings of loss, shame, frustration and false hope. And this struggle is not a struggle of function, skills, ergonomics or goals, and therefore mostly hidden.
So what can “rehabilitation” mean in this context? What is still possible?
For this, we may need to expand our awareness of ourself beyond the boundaries of the physical body. Wellness in the body helps the soul and spirit, for sure. But nourishment for the soul will in turn enrich and enliven the body. A troubled soul could be working out its illness through the body and in so doing renew itself. An ill body affects the degree to which the soul can express itself through activities, but also: a vibrant soul can radiate through a weak body and sustain it.
Limitation brings depth. When through physical or mental illness our force in the world diminishes, we are asked to develop a different force. A force maybe, that hitherto lay hidden as an unknown inner potential. With that also comes a shift in the kind of nurturing we need.
We live in a time when the world of culture, art, science and music is accessible to even the most housebound person. Here we could find enrichment for our inner person: in the beauty of music, in the deep truth in poetry, the overwhelming discoveries in science and the agony and ecstasy of existence expressed in philosophy. This then can be a more sustaining kind of nourishment.
When restoring to normal life is no longer possible, our wider view of rehabilitation offers possibilities that lie beyond the impairments on a physical level. I would like to suggest that in other areas of our being, rehabilitation would be renewal rather than restoring to a previous condition. A renewal of our sense of self, our worth and our purpose.
As mentioned earlier, there is no honor in living with a chronic illness. But we do have the possibility of carrying our burden with honor.