By Dorothea “Dottie” Cassidy Pfohl, RN, BS, MSCN
Clinical Coordinator, University of Pennsylvania
Health Services, MS Center, Department of Neurology
Member, MSAA Healthcare Advisory Council

Changing Needs

Photo of a family walking in a park

The needs of people with MS and their loved ones vary from individual to individual and change over time.What a person requires emotionally and psychologically at the time of diagnosis can be very different as the disease evolves.

For example, the newly diagnosed person must come to grips with having to cope with a long-term illness. He or she may need to choose treatments that vary in risk and complexity, consider living with physical limitations such as overwhelming fatigue or mobility issues, and experience stress and worry for both oneself and his or her family. Periods of relapses may require care and rehabilitation to regain function. Financial insecurity may grow with uncertain employment status, insurance coverage, and growing medical costs. After recovery, and with normal aging, work stamina may be impacted, or job abilities may change. Living with uncertainty is stressful, and over time, can also take its toll.

The Impact of Symptoms on Relationships and Roles Relationships, even without the unique challenges of living with MS, can be complex. Before thinking about roles, it is important to be aware of stereotypes based on gender. How often we hear terms such as “the man of the house,” and yet many households today are headed by women. When a man is expected to be the breadwinner, protector, and the physically strong one, having MS may seem like a challenge to his masculinity. A partner who needs to take over such responsibilities may also feel she is somehow emasculating her mate. A woman may believe she is less feminine, or try to do it all – and risk burnout and exhaustion.

Another scenario is when a wife, who may be proud of her homemaking skills, may feel devastated that she can no longer do the things she once did well and loved to do. Modern families often cross traditional lines of roles and gender, and this can help to make coping with the role changes with MS easier. At the same time, other factors can make these role changes more challenging. Keeping an open mind and open heart will prove to be vital assets.

Sexual roles may be affected when disability presents symptoms such as sexual dysfunction or bowel and bladder disorders. Intimacy may suffer from any of the above changes or pressures of daily life, just at a time when the family is most vulnerable. Cognitive changes may erode the sense of self or knowledge of a mate, and demand new ways of being in a relationship with each other. Behaviors may also change over time or because of symptoms. An otherwise outgoing person with incontinence, for example, may withdraw from friends and activities because he or she may feel unable to be secure or present the image he or she would prefer.

Parents may feel they are an embarrassment to their kids because they can’t be the athlete or classroom aide, or keep up with the rigors of work, home, and raising children. They may simply not have the energy or stamina to keep up with busy youngsters or do what other parents can. And, independently minded souls don’t like to ask for help or rely on others, but options may be limited. Children may have to assume adult responsibilities and become caregivers. Alternatively, the person with MS may feel a need to compensate and give 110 percent to make up for what is lost.

Parents of adult children with MS also may be asked to revert to taking a more active role in caring for their child with MS. When returning to live with parents, the person with MS may feel resentful, rebellious, or feel as though he or she is destroying the parents’ “golden years.” Physical care may include personal care that greatly invades one’s privacy. And, on a fixed income, finances may be strained when wages must be paid from their limited budget for additional help.

Promoting a Better Quality of Life

We now live in a hopeful time for people with MS. An array of treatments and medications are now available. These can manage symptoms, promote function, hold disability at bay, and favorably affect the course of MS by reducing relapse rates.

Adhering to disease-modifying therapies and symptom-management strategies may require complex protocols and performing techniques usually done by healthcare providers (such as injections or catheterization). Patients and care partners may be concerned about acquiring these skills and worry about doing them correctly. They may even face their own reluctance or resistance, and catch flack rather than kudos. This is where the MS team can offer training, monitoring, moral support, and encouragement. People with MS and their loved ones have embraced these challenges admirably, but they still deserve and need support.

Fortunately, not every person with MS faces all of these challenges. Communication skills, along with the support of caring professionals, can help families cope with relationship issues and role changes. Legal advice can assist with securing financial benefits or accommodations when issues arise. A comprehensive medical team can help weather bouts of worsening symptoms or growing limitations. Organizations like MSAA often provide vital links and serve as a godsend, offering information, education, and resources to support a chain of care.

Asking for and securing help may be difficult for some, but it may be necessary to get things done. That help may need to come from a variety of sources, including family and friends, hired help, community organizations, and/or social supports. Consider engaging in family or couples’ counseling to help ease transitions and make adjustments to promote better understanding.

Ideally, the needs of each family member can be supported in the interest of all. Being able to identify and acknowledge abilities, roles, and expectations, permits a plan to develop – a plan that will meet changing needs and evolving roles, while ultimately promoting a better quality of life.