NYAPRS Note: Some very timely and personal comments from the ‘Godfather’ of psychiatric rehabilitation, our beloved Bill Anthony.I meant to send this last year...and just found it now.
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 September 28, 2012
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:
- Identify what each provider can offer and use them accordingly. Try to organize providers by time and location to avoid running around. Ensure that you see them as much (or as little) as you need. Sometimes it is as difficult to refuse unnecessary help, as it is to ask for it. Engage a provider in helping with this task.
- Seek out opportunities for interactions with peers who have the same health condition. Talking and listening to people I have met in my MS support group and at educational conferences and the like is invaluable to learning how to manage my MS and my MS treatment providers. Peers often share helpful, personal material with each other that they may not share with a professional.
- Be clear and assertive about what goals you want to achieve. Professionals may suggest MS medications and other medical treatments because they assume you want them - without checking how their suggestions affect your goals.
- Try “alternative” resources. Not too long ago people with MS were advised that exercise would worsen MS. Now, exercise is seen as a valuable, evidence-based intervention. If you believe an alternative may help you, you may be right.
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.