+ Sabrina M. Neeley, PhD, MPH Department of Community Health Boonshoft School of Medicine Wright State University, Dayton OH Living with EDS: Developing an Effective Self- Management Strategy to Maximize Your Health and Quality of Life
+ Does EDS Ever Make You Feel Like This?
+ What is Management? “…the act of getting people together to accomplish desired goals and objectives using available resources efficiently and effectively” -Wikipedia
+ Self-Management of Chronic Health Conditions Multidimensional Complex Holistic A path, not a destination Source: Lorig, et al Living a Healthy Life with Chronic Conditions. Bull Publishing Company.
+ Self-Management Tasks Take care of your condition Building a collaborative care team Keeping records Carry out normal activities Manage emotional changes Source: Lorig, et al Living a Healthy Life with Chronic Conditions. Bull Publishing Company.
+ Starting on the Path to Effective Self-Management Write out your goals and desires (SMART) List the hurdles - what, when, and how Have a plan Start a journal Begin where you are now Take one step at a time Learn from the setbacks Spend time "cleaning house" Stop comparing yourself to others Reward yourself Source: Sparkpeople.com
+ Keys for Effective Self-Management Holistic health and wellness perspective Intrinsic motivation Self-efficacy Positive support system
+ Source: World Health Organization
+ Wellness Wellness is the dynamic process of becoming aware of, taking responsibility for, and making choices that directly contribute to one's well-being. Source: Medical Wellness Center, University of Miami
+ Intrinsic Motivation Internal, rather than external Comes from me, not others Often goal-oriented, and reinforced by goal achievement Often diminished by increased extrinsic motivation Enjoyable, uplifting, energizing
+ Self-Efficacy = Confidence Learning about EDS Knowing what questions to ask a doctor Making the most of your doctor visits Adjusting physical activities Adjusting diet Making accommodations to life activities
+ Building and Maintaining an Effective Support System Family, friends, co-workers, neighbors, other EDS patients, medical and health professionals “Independence is being able to get other people to help you.” Communicate effectively Be specific in your requests Don’t be afraid to fire
+ Julia Fox Garrison Don’t Leave Me This Way “HOPE IS A POWERFUL MOTIVATOR. Hope is always what gets you to the next goal; once achieved, there’s a goal after that. Anyone who tries to kill the hope in your heart is the one you have to be prepared to battle.” “YOU OWN YOUR CONDITION – and you are generously sharing it with everyone close to you.” “We’re only victims if we choose to let ourselves be consumed by something. I’m a survivor who continues to thrive.”
+ If not now, when?
+ Questions?
+ References Lorig, et al Living a Healthy Life with Chronic Conditions. Bull Publishing Company. Medical Wellness Center, University of Miami Stanford University School of Medicine. Chronic Disease Self- Management Program. World Health Organization.