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Musings on Consumer Self-Management
William A. Anthony, PhD, Executive Director of the Center for Psychiatric Rehabilitation, Boston University, and Member of the CIHS Steering Committee
In my professional role, I have been a strong proponent of people managing their own health behavior change processes to the greatest extent possible. However, it wasn’t until I had to manage a serious and potentially long-term disabling condition of my own (multiple sclerosis) that I came to understand the challenge of health behavior management from the insider’s perspective. By examining my own attempts to manage my MS, I thought I might learn something about the issues related to self-management of severe mental illnesses. I draw this comparison between severe mental illnesses and MS as a metaphor only to promote understanding of the tremendous number of issues that a person with a serious health condition must manage (no one-to-one relationship intended).
As the complexity of my condition and the sheer number of new people and programs involved in my life began to look overwhelming, I did a quick analysis of my healthcare situation with respect to what factors needed managing in order to increase my chances of success. I found the numbers startling. For example, I am now involved with:
8 different healthcare provider organizations;
9 different types of healthcare provider personnel;
5 different kinds of meds/vitamins/medical equipment;
5 different sources for paying for meds/vitamins/medical equipment;
4 different payers of MS related healthcare services; and
3 different MS advocacy group memberships.
Just keeping track is becoming a part-time job. And the above healthcare categories do not include care un-related to MS (e.g., optometry, dentistry, dermatology, internal medicine); non-health related services sometimes associated with a severe condition (e.g., housing services, transportation services, employment services); or individuals and agencies involved in healthcare that people with MS often use (e.g., therapists, trainers, personal care assistants, neuropsychologists, SSA).
Though it could be MS related fatigue, it tires me out just adding all of these up. Managing any serious, potentially long-term condition is a lot of work. And people with MS don’t have to confront the level of coercion, ignorance, prejudice, and discrimination that people with severe mental illnesses do.
This metaphor stimulated me to think further about what resources could help manage a severe condition and the resources ostensibly trying to help. Several self-management tips stand out that primary and behavioral healthcare providers can encourage among their clients:
Self-management is not easy or simple, and needs to be seen for the task that it is. The system sometimes seems to thwart people’s difficult self-management efforts. That is when a peer, a helpful provider, a new resource, or the passage of time itself can help people in their desire to captain their own healthcare ship.
First appeared in the SAMHSA-HRSA Center for Integrated Health Solutions’ newsletter, eSolutions: www.integration.samhsa.gov/about-us/esolutions-newsletter/september-2012
Reprinted with permission
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