Sponsored: 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.
These quick examples illustrate some of the obstacles that people with progressive MS, as well as their partners, face in their relationships. It’s challenging to build a united front under such changeable circumstances. From personal experience, I can say that it’s more than worth it.
The power of relationships for people with MS lies in agreeing from the start to effectively communicate each other’s needs. Using good listening skills to problem-solve, addressing conflict resolution whenever necessary, and proactively managing a partnership is at the core of healthy relationships.
For a relationship to survive, the parties must voice their feelings and opinions in a constructive and loving way. This requires mutual trust, honesty, and unconditional love. Here are some tips:
Living with MS is never easy. There are times when the disease can be overwhelming. That’s why we need to surround ourselves with people who love us best.
Nurture your relationships. They are the golden light no matter how dark the storm.
Reference
(1) National Multiple Sclerosis Society. MS Symptoms. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms. Accessed December 26, 2019.
Novartis Pharmaceuticals Corporation
East Hanover, New Jersey 07936-1080 ©2020 Novartis 3/20 XSM-1378606
Thank you for identifying these valuable points, Cathy. One thing I'd add, from my personal experience, is how important it is to recognize that a spouse or partner rarely gets to acknowledge their own pain and challenges. I found that encouraging my husband and children to speak and share their own disappointment or isolation when my illness is flaring helps everyone feel better. This is often difficult because it's natural that the healthy partner worry that by sharing their pain, it's a burden for their loved one who is already suffering. And that might be the case for some. But it's worth trying to work on how to make this communication happen.