When you have multiple sclerosis, you don’t have it alone.
You may be the one with MS and the physical symptoms that go along with it, but you can’t build a fence around yourself in order to protect those around you. Like it or not, MS spreads its tentacles out and affects the lives of your loved ones.
Besides being a person with MS, you may be a sibling, a spouse, a parent, a friend, a co-worker. You count on others and they count on you.
Depending on how MS has manifested itself in your life, it will touch everyone around you in small ways, and in profoundly significant ways, both emotionally and financially.
Emotionally: We’ve all had to do it at one time or another. Watching a loved one struggle with health is not a pleasant experience. Relationships between husband and wife or parent and child are disrupted — not that it’s an entirely negative thing, but change isn’t always quick and it isn’t always easy. In the case of MS in the family, close relationships may forever be in a state of flux.
A spouse who becomes a caregiver may feel overwhelmed by responsibility and fearful about the future. It’s a perfectly normal response. Open and honest discussion is necessary to avoid the pitfalls of an ever-changing relationship.
A child whose parent has a chronic illness may have trouble expressing the fear and doubt that accompany it. Worry about the parent, as well as concern for their own fate, may not be apparent. Discussion should be initiated by the parent(s) and questions addressed directly and honestly.
Friends and co-workers will have their own questions about changes in your health. Some of them will find the topic uncomfortable and may avoid any mention of it. If your MS is not a factor in their lives — particularly on the job — you owe no explanations. However, if it will impact the relationship, you needn’t wait to be asked a question — it’s okay to broach the subject yourself and say what needs to be said. It is the unspoken question that has the power to come between you.
Financially: MS can be an expensive disease. The issue of health insurance, if you don’t have a good group policy, is a major obstacle for many people with MS. Individual insurance policies with a pre-existing condition are difficult to come by and are very costly.
Aside from the obvious expense of health insurance and out-of-pocket costs associated with medical care, some MS patients find they have to purchase additional items to maintain quality of life. These may include mobility aids and other assistive devices, home renovations, vehicle alterations, etc.
If you can no longer function on the job, the switch from full-time employment to part-time work — or unemployment — can have a dramatic impact on the household. In some cases, family members who take on the role of caregiver, with its associated restrictions, also experience a decline in income.
No one in the family is immune to the emotional and financial impact of a chronic illness. Those of us who have loved ones to lean are the fortunate ones.
How has MS impacted your family? Please share your stories in the comment section below.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.