When You Pressure Yourself to Be a ‘Success Story’ of Your Illness
On mornings like this, I find myself floundering. For the second time with this illness, I find myself detached from the outside world. After months of striving to balance an ever-decreasing workload with an ever-increasing symptom load, I stepped back to make my health my number-one priority, something my body no longer deemed a choice. On the one hand, it feels reasonable to wait to return to “the world” once I can shower, prepare food, do therapeutic exercise and otherwise maintain my day-to-day life with manageable symptoms. When I try to perform above my capacity day after day and my symptoms are consistently high, quality of life suffers steeply. I feel pressure to use my time wisely, to do everything within my power to transform this experience of struggle into a patient “success story.”
Connecting with an online community of other “chronnies” (as I’ve started saying) fosters both solace and insanity for me. There are many success stories and endless promises that certain lifestyle changes, combined with acceptance of a new normal, can allow those with illnesses to return to a “semi-normal” life. This gives me hope and useful tools, but also leaves me frustrated that all of my efforts have not yet returned me to this elusive place of sustainable functionality. Some days I find myself frenzied, striving frantically to incorporate as many positive practices as possible. If I do four types of meditation daily, a variety of therapeutic exercises, maintain a consistent eating and sleep schedule, manage my emotions, and check off the boxes next to the list of patient management techniques, then I should get better — so these things say, and so I say to myself. So I practice being a model patient for months, and then for years. And yet here I am.
This is not to say I haven’t improved through symptom management. The books and techniques I’ve found helpful have become my new holy canon and I a devout follower, acting with no little amount of faith in the unseen promise of the holy grail of wellness. But I still face moderate to severe disabling symptoms on a daily basis. So I ask myself, what am I doing wrong?
Perhaps I’m overemphasizing the role of the illness in my life. Some literature might suggest I have become over-identified with the role of being sick. If I can change my perspective and adjust my life to build up other identities, my perception of my pain and illness will also adjust so that it is no longer such a strong force in my life, they say. And yet, my bodily capacity has comprehensively redefined my sense of self. It is a force that binds my body in ways that willpower and positive management can’t seem to cure, and that requires immense determination to maintain basic activities of daily living (think getting clean, eating, maintaining a home, etc.).
So still, I find myself running in circles and tying myself in knots as I fight daily to obtain a sustainable life and symptom load. As I grasp for certainties, I realize the fallacy of trying to obtain concrete answers for the situation. I’m struggling to gain control over illness that remains poorly understood in the scientific and lay communities. And my body, which was once taken for granted, is now the target of myriad, often contradictory suggestions that promise a return to “normalcy.” When these fail or fall short, the blame can too often fall back onto the “problem patient,” rather than on the broader lack of understanding and knowledge about the illnesses themselves.
So as I chase myself in circles, striving daily to transform my own illness experience into a “success story,” I wonder where there might be room for a little more compassion and a little less frenzied grasping. Can we, patients and doctors alike, gain a greater sense of control by accepting that this is not a force we can completely control? Can we create a gray space in the medical model for those of us chronic patients who live in the undefined, ungraspable, incurable space between sick and well? Most “success stories” seem to emphasize a patient overcoming or surpassing their role as a patient. Might there be space for a success story of a patient who is simply coming to terms with the bodily limitations of illness and its consequent emotional and social repercussions?
Is there an opportunity for a patient to be deemed “successful” by simply doing their best to adapt, cope and accept their new reality as it is today — not with hopes for a different and more functional future, but rather a growing respect and honoring of the bold endurance and courage it takes to embark on each new day as an unknown journey?
A version of this post first appeared on Alex and Ellen’s T(ALKS)pot.
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