| **PSYCHOSOCIAL ISSUES FOR WOMENWITH AUTOIMMUNE DISEASE**

**Deborah M. Miller, PhD, LISWDirector of Comprehensive CareMellen Center for MS Treatment and ResearchThe Cleveland Clinic**

Many factors affect the psychosocial well being of womenwith autoimmune diseases. A useful way to think about this topic is the stress and copingmodel of adjustment proposed by Lazarus and Folkman*(*Folkman S, Lazarus RS. Therelationship between stress and emotion: The implications for theory and research.*Social Science and Medicine 1988.*26:309-317*.)*

In this theoretical model, an individual experiences anunsettling or disturbing external event and makes an appraisal of it and then, on a moreor less conscious level, compares the event with the known available resources that mayhelp manage the event. When the event is perceived to outweigh the available resources andis consequently considered a threat, the individual makes a coping response that will havea major impact on the outcome of that event.

Everyone faces stressful situations each day. A woman withautoimmune diseases experiences those daily hassles as well as stresses unique to hercondition. Some of these additional stresses are managing a disease with unknown cause orcure. The symptoms she experiences can include any combination of depression, fatigue,pain, cognitive dysfunction, sexual dysfunction, difficulties with walking or using herhands and loss of vision. Some of the milestones in disease progression she will face arereceiving the diagnosis, confronting the chronicity of her disease when she has the seconddisease episode, managing the need for assistive device in ambulation, loss of independentmobility in the community, and, in some cases, loss of capacity for self care. Herappraisal of these events will be based on limited experience, because her disabilitycomes at an unexpected time in life when she has few role models to whom she can turn forexamples of how to manage. A particular challenge she faces, and for which her doctor canoffer little guidance, is how to plan for her future, especially as a marriage partner,parent or worker.In order to manage her illness and its consequences, the resources a woman has availablecan be crucial. Some of these resources are internal and relate to her usual emotionalhealth and interpersonal characteristics. Both may be severely challenged as sheexperiences reactive depression to the situations she confronts and is called upon tointeract with health care providers and other individuals whom she doesn’t know.Other resources are external and relate to those persons, institutions and goods who mayhelp her. Family members and other informal supports, most often working spouses, schoolage children or aged parents, are clearly the backbone of all other support systems. It isimportant that we as health care providers nurture this important source of support and bemindful of the expectations we put on these family members.

A women dealing with one of these little understoodautoimmune diseases needs access to health care providers expert in the subtleties of thedisease and the full range of available treatment options.

An essential but unfortunately scarce resource is access topersonal care assistants and adaptive equipment. These are not usually covered by healthinsurance and are often the greatest need. Health insurance is crucial but can bedifficult to obtain after the diagnosis is made. This will cause women or their spouses tolimit job mobility for fear of losing current insurance.

The way a woman manages these challenges is referred to ascoping. Active coping strategies such as normalization, active reformulation, informationseeking and problem solving are generally more effective than those strategies thatinvolve avoidance, distraction or withdrawal. In general, effective coping is amultidimensional dynamic process that is responsible to situational demands and may changeover time.

Inevitably, having an autoimmune disease will have itsimpact on a woman’s life in regard to her physical and emotional well being, familyfunctioning, financial status and ability to be a contributing member of society. She maywell negotiate these challenges and grow emotionally in the process. But her eventualadjustment will inevitably depend on others as well as herself. There is much that we asscientists, health care practitioners, legislators and concerned individuals can do toinfluence these outcomes, and meetings such as this are proof of that.

next |
|------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|