It was an Open Research Exchange by Patients Like Me. The survey was called "Perceived Medical Condition Self-Management Scale". They asked patients with a range of long term conditions - from RA to Crohn's and diabetes.
The questions covered topics from how often you take medications vs. how often you forget and not running out of pills before getting a refill. I was glad to see a lot of us are human and occasionally forget to take them.
Two take-aways for me are:
- Self management hinges on being knowledgeable about your disease and being your own self advocate.
- It also involves not just the physical aspects of the disease but the mental aspects as a coping mechanism.
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