The Power of Relationships When it Comes to Advanced MS

This post is part of a paid collaboration between myself and Novartis. All opinions expressed are, as always, completely my own.

Living with multiple sclerosis (MS) is like riding a roller coaster: the ride is long and unpredictable, there are tremendous ups and downs, and you can experience physical or emotional distress without warning. 

Since I was diagnosed back in the 1980s, I’ve written many articles on the importance of nurturing relationships, and for good reason. It’s a fact that our lives are richer and healthier when we have the love and support of others. But when you live with a chronic illness like MS, cultivating close ties is even more important. The unpredictability and unrelenting nature of the disease can be scary and overwhelming. Having someone stand by your side during your darkest hours can boost self-worth and help you cope with any traumas that come your way.

Strong connections of unconditional caring and compassion can reduce anxiety, stress, depression, and feelings of loneliness. They help you manage the unpredictable and often frustrating road you’re traveling. 

Unfortunately, relationships often suffer when illness strikes. For example, soon after my diagnosis, I volunteered as a support group leader. When I entered the meeting room I noticed that half of the women sat in wheelchairs. During the meeting, I found that many were filled with anger, their spouses having left them or verbally abused them after they were diagnosed with this debilitating disease. It also became apparent that the women were upset that a newly-diagnosed patient thought she could help them, and I can understand why. They suffered heart-wrenching hurt and humiliation based solely on their disabilities. Having just been diagnosed, I was not yet equipped to lead them.

Since then, I’ve heard many stories of abandonment, neglect, or abuse. It’s a double-whammy to receive a devastating diagnosis and then be deserted by a loved one. There’s a deep sense of loss that leads to feelings of betrayal, doubts about one’s self-worth, and other emotions that can darken one’s mental health. 

It’s tricky to maintain healthy relationships while living with an unpredictable illness. 

Patients like me who live with relapsing remitting multiple sclerosis (RRMS) endure symptoms that wax and wane and are not always apparent to others. It is challenging. Yet those with progressive MS face hurdles that are very visible and even more formidable. Those with progressive MS depend on the assistance of a cane, a walker, or a wheelchair to remain ambulatory; this requires tremendous patience and understanding from a care partner. 

It is common for those with advanced MS to lose partial or full use of their hands and or legs. They require assistance with their activities of daily living (ADL), such as bathing, cooking, cleaning, eating, shopping, toileting, incontinence, paying bills, managing money, and using transportation.1 Such patients experience a significant loss of independence. 

Social activities for those with progressive MS present accessibility issues that need to be addressed to ensure a fun and safe way of life.