The art of acceptance
Some people are shocked when they receive an MS diagnosis or develop new, debilitating symptoms, says occupational therapist Laura McKeown, PhD, who has researched the experiences of MS caregivers and teaches at the University of Ulster in Northern Ireland.
“Until the person with MS can accept they have this lifelong condition, they aren’t going to be open to having any support,” McKeown says. Likewise, caregivers need to be ready to offer support, she says.
Accepting the disease also prepares those with MS and their loved ones to make tough decisions around necessary work and lifestyle changes, says rehabilitation psychologist Kevin Alschuler, PhD, who counsels people with MS and their families at the University of Washington School of Medicine in Seattle. He encourages them to develop a flexible mindset and think beyond “what I have always done,” and try different approaches to achieve their desired outcomes.
“Flexibility is not just about, ‘What do I do about fatigue today?’ but, more broadly, ‘How do I adjust to a new symptom later?’ ” he explains. “We as humans often don’t do particularly well with uncertainty, unknowns, constant changes. We like to stick with our strategies that have always worked.”
Michael Nesson of Newburyport, Massachusetts, and his longtime partner, George Willey, compare living with MS to playing Whac-A-Mole. “We wonder what’s going to pop up next and how we are going to tackle it,” says Nesson, 54, who was diagnosed in 2009.
With a sense of humor and flexible mindset, the two work through exacerbations of Nesson’s constantly changing symptoms—which include fatigue, left-side weakness, and vision and vocal changes—and through the effects of his disease-modifying treatment.
On Fridays, Nesson injects his medication, which produces flu-like symptoms all weekend and leaves him feeling more fatigued and emotionally worn out by Sunday night.
“He wants less of my help,” during those days, Willey says. “When I say something that (upsets) Michael, he can shut down. I used to pull my hair out. I’d think, ‘What happened?’ ”
After two years struggling through these challenges, Willey has learned that when a conflict arises during those three days, it’s best to either let it go or bring up the problematic subject later.
Alschuler sees similar situations play out in his practice. He worries when side effects of a medication significantly interfere with relationships. He also commends Nesson and Willey’s flexibility: “It sounds like they are wrestling with whether this is the right medication going forward. But in the meantime they are learning how to cope effectively with the side effects.”
Both Nesson and Willey practice mindfulness exercises, which Willey says helps him to remain flexible and prioritize all that’s on his plate: “I am more calm, centered.”
The partners, who have an adult son, know their days are numbered in the 225-year-old home they renovated together. They will likely trade out their dream of retiring in Florida for a ranch-style house in Massachusetts in order to maintain continuity of care with Nesson’s doctors there. While the two lament this loss, they focus on positives in their lives.
“Michael is always going to have health challenges and I will always be willing to be a carepartner,” Willey says. “The best and strongest thing we have going is our 30-year relationship.”
Intimacy creates trust
Talking about the challenges of living with MS—including losses such as retirement plans gone awry—nurtures intimacy, which in turn encourages more communication and builds trust, Rzeszut says. “Each person needs to state what their needs are to the other person, their challenges, what is making them anxious or worried,” she says.
As well, couples need to establish emotional intimacy before they can define what physical contact feels good, Rzeszut says. If couples no longer can enjoy a full sexual relationship, they need to acknowledge that loss, then talk about what does or does not feel good to each of them.
“You have to love what you have and let go of what you don’t, or it will just drive you down,” Patti Berry says. “Intimacy for us is communication, laughter, holding hands, holding each other. And that’s OK.”