This is an excellent article from CFIDS & Fibromyalgia Self-Help. It is not easy to live with chronic illness, whether you’re the patient, the caregiver, friend or family member. Included in this article are ten practical ways that patients and their families can use to make their households and relationships work better.
By Bruce Campbell
CFS and fibromyalgia force profound adjustments, both for patients and for those around them. Household tasks are juggled, finances are often strained, and all family members wonder what the future will bring. What strategies will help you and your family adjust if you are struggling with the disruptions created by CFS or FM?
Understanding Your Unique Situation
The foundation of an effective response is understanding your unique situation. Every family’s circumstances are different. Just as each patient must individualize his or her self-management strategy, families need to develop a response to CFS or FM that fits their individual circumstances.
The scope of adjustments will be dictated by the seriousness of the patient’s health problems. CFS and fibromyalgia vary greatly in severity. The average person in our self-help program reports that she functions at about 25% of normal, but there are sizeable numbers who are housebound, while others are less affected and continue to work part time or full time. The severity of medical issues will set the limits on the amount of adjustment required.
The family’s financial situation is also crucial. Some families can afford to let the ill person stop working or have her take an early retirement, while others are stretched financially and may be forced to make financial adjustments of various kinds. The presence or absence of children and, if present, their ages is significant. Couples with school-age children have to juggle work and child care. Those with adult children may get help from their kids. The health of the spouse is another important factor. In some families, both spouses are ill or a normally-healthy spouse has a health emergency like a heart attack or surgery.
A final factor is the strength of the bond between the partners. Some marriages are made stronger by illness, while others become frayed and still others break. The response of the well spouse to illness may vary from strong support, on the one hand, to disbelief, abuse and abandonment on the other. Some people in our groups, who have had multiple marriages report that they have experienced the full range of possible responses, most commonly a lack of support in an initial relationship and understanding in a later one.
Here are ten ideas for how families can adapt to CFS or FM.
Read the rest here.