Reprinted from "Supported Education" issue of Visions Journal, 2003, No. 17, p. 6-7
The concept of “illness self-management” is gaining a lot of attention these days. The term itself is borrowed from the physical health field, especially in relation to illnesses such as diabetes and arthritis. These are ongoing health conditions that entail a fair amount of knowledge, skill and discipline on the part of people who live with them to carry out the day-today aspects of one’s care plan (e.g., taking medications regularly) as well as to adopt lifestyle practices (e.g., stress management strategies, changes in diet) that can lessen the impact of the illness on one’s life.
In the last few years, illness self-management has also gained attention in the area of mental illness — and for good reason too, because the same qualities necessary to manage physical illnesses also come into play for conditions such as depression, anxiety, eating disorders, and also for psychotic illnesses such as schizophrenia or types of bipolar disorder. Qualitative studies show that people with mental illness highly value, but generally lack access to, the kind of information and resources that form the basis for illness self-management.
Especially in the early stages of the illness, basic information — about symptoms, treatment alternatives, community resources, even about the diagnosis itself — is often lacking. And it is during these early phases — when the individual may be trying to complete secondary or post-secondary education — that this information is crucial.
Dr. Kate Lorig, a researcher at Stanford University, and a pioneer in the field, suggests that illness self-management involves three separate components: basic illness management, emotion management, and role management. The first, basic illness management, means understanding the illness and various strategies for managing symptoms and stressors. Emotion management involves coming to terms with the diagnosis, adjusting life expectations in a healthy way, and in the case of mental illness, addressing stigma issues. The final component, role management, means developing the ability to function effectively in valued social roles.
Being a student is one of those highly significant roles, and a young person who develops mental illness in the midst of his or her schooling needs significant support to retain a foothold in the educational world. Not only must the illness receive prompt identification and intervention, but the individual must also learn to manage the illness in the context of the school setting — which is the very environment that may have triggered the onset of the illness in the first place.
When we think of mental illnesses like bipolar disorder and schizophrenia, we often think of symptoms that impair the individual’s connection with reality. However, the key issues that must be managed in the school setting are often less obvious and more related to the so-called ‘negative’ symptoms such as problems with motivation, or to cognitive problems, such as difficulty concentrating.
Successfully managing in the school context, then, involves learning strategies like:
breaking assignments down into sub-components
avoiding night classes (which occur after peak periods of mental energy and often last longer than regular classes)
finding a study space free of distracting noise or activity.
Students with mental illness may also lack the ability to organize themselves and, in general, to manage their time effectively: a crucial skill for completing multiple tasks and working to various competing deadlines. Students, therefore, must adopt strategies such as, at the beginning of a term:
marking their calendar with all essay and exam deadlines for the term
developing a timetable of milestones for completion of various projects.
These kinds of abilities assume that the individual has a basic understanding of their own illness. However, this is not always the case for a young person who may not have been offered much information, and who also may be emotionally unready to ‘accept’ their illness. This means that it is important for mental health professionals to help young people get to the point where they do have a basic understanding of their illness, and are ready emotionally to ‘live with’ the illness. What the young person needs to start is illness-related information in the context of a therapeutic relationship in which the individual is offered hope about being able to live successfully with a mental illness, and is helped down the road to gaining the necessary skills to live with that illness.
Emotion management, within the school setting, means addressing and developing strategies to deal with issues such as:
anxiety about returning to a setting where the illness may have first come to a head, and fear of having another ‘failure’
adjusting expectations about course loads, and about the need to ‘keep up’ with their peers
the fear of being singled out or discriminated on the basis of having a mental illness
anxiety about navigating a big institutional environment with numerous rules and regulations
dealing with unenlightened students, professors or staff.
Intervening before Illness Derails Education – by Suzanne Tainter, in the University of Michigan Research New
Family to Family – a newsletter for “first-episode families”, Issue No. 5, on returning to school and work
Contact Sharon Scott, Editor, at Box 395, J-1631 St. Mary’s Road, Winnipeg, MB, R2N 1Z4 or at firstname.lastname@example.org
Managing mental illness within the school context also involves the ability to negotiate accommodations — alterations to the regular school environment — that would help even the playing field with students without a disability. Many of the articles in this issue of Visions deal with this issue, so we won’t dwell on it here, except to say that negotiating accommodations is a skill in itself, and a key one for a person trying to successfully manage the educational environment while living with a mental illness.
Ideally, young people who develop mental illness while at school can access the kind of help that can get them back on their feet as soon as possible. With projects such as CMHA’s Supports to Higher Education project (see page 20), and with public education initiatives aimed at settings such as schools where young people spend much of their time — such as the early psychosis awareness campaigns run by the Vancouver Coastal Health Authority’s Helping Overcome Psychosis Early (HOPE) program (see www.hopevancouver.com) and the Fraser Health Authority’s Psychosis Sucks campaign (see www.psychosissucks.ca) — this kind of early intervention is becoming increasingly likely.
Helping young people make a full recovery involves more than early intervention in the medical sense. As we’ve discussed, it means helping them manage the basics of the illness, helping them come to terms emotionally with the experience, and providing support so that people can manage the illness in the context of postsecondary education, and any of the various roles and settings that they value.