Psychotherapy and Multiple Sclerosis: Behind The Mask of Joy By Tom Medlar, LMHC on 3/14/23 - 2:12 PM

Marion was the last of seven children in her family who grew up in a rural part of Maine. Family and schoolmates formed her social world, and she delighted in the freedom, adventure, and playfulness of her childhood. She loved boating, fishing, bike riding, star gazing, and silent walks in the woods. Marion spoke lovingly of her family, their home, and the natural beauty and peace where they lived. As a secure and robust and cheerful child, Marion had earned the nickname “Joy.”

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Marion completed high school and briefly worked different jobs until receiving a diagnosis of Multiple Sclerosis and experiencing a gradual diminishment of her physical capabilities. She grieved over the loss of her dreams of marriage and a family of her own through which she might show and teach her children the many things she had learned and loved. The dreadful progressive disease had eroded many of her hopes and dreams and abilities, as she became increasingly dependent on others for all daily care and mobility.

The Burden of Multiple Sclerosis on Joy

When I began meeting with her for supportive psychotherapy at the nursing facility where she lived, Marion was limited to moving her neck and one arm. While she could speak, Marion experienced mild cognitive deficits, which to a degree further increased her dependence. Over time she lost contact with her siblings, who were older, and who had either died or had health problems of their own.

As in childhood, Marion continued to be known to family, friends, and both the residents and staff of the nursing facility by her childhood nickname due to her usually cheery outlook. Sustaining a public image of cheerfulness allowed her to retain a central component of her personality, and to preserve a partial degree of control in her life.

As the burden of life’s troubles weighed more heavily on “Joy,” which began as an appropriate nickname, it gradually came to reflect a mask over her sorrow more than an expression of her native temperament.

Everyone at the nursing facility knew her simply as Joy. They believed her to be genuinely joyful because she would always greet others with an almost exaggerated cheerfulness and claims of feeling happy. “Hi Joy, how are you doing today?” would be cheerfully met with “I’m great, super, I’m good.” Some staff persons would marvel at her upbeat demeanor, despite her debilitating disease.

The nursing aides would use a mechanical lift to move her from bed to a wheeled recliner, and then I would wheel her to the facility library where we would meet for psychotherapy. On the way to the library, passing staff would smile and greet Joy and ask how she was doing, and she would respond by stating, “I’m fantastic, terrific!”

But when the library door closed behind us, Marion would cry or rage as she shared her feelings about her predicament and her losses. “I need you to know how I feel inside, but I don’t want the others to know,” she desperately explained.

Finding Grace in Grieving Through Psychotherapy

Marion felt so little control over her life circumstances, over her body, and over her privacy. It offered her a bit of control, though, to publicly maintain her lifelong persona as someone happily delighting in life. At the end of therapy sessions, she would ask to pause so it might not look like she’d been weeping, and so she might regain her composure. Then, during the ride back to her room, she would again sing out her cheerful assurances to others that she felt “wonderful.”

Marion got along nicely with some of the nursing aides who cared for her, yet she would squabble with some of the others. One day the aide with whom she sometimes quarreled asked me, “Why does she like the others, and not us?” In our next session, I offered Marion feedback about the observations and concerns of her caregivers, and she was willing to explore the matter.

“What do you do differently with the aides that you get along with?” I asked. “Well, I give them compliments,” she answered. Maybe you could experiment, I suggested, and try giving compliments rather than criticisms to the other aides. Within a few days, Marion and all her aides were pleasantly working together. “I guess they’re like me; you like someone more when they’re nice to you,” she said.

In retrospect, that particular session, and our psychotherapy in general, provided Marion with the opportunity to verbalize and learn from her emotional reactions to the situation. Adjustment to a disability condition is always a complicated and painful process.

For Marion, her M.S. had been slowly progressing over decades. She felt some resentment towards others who could walk, whom she thought might take their good luck for granted. At moments, she felt cheated by her illness.

Generally, the process of adaptation includes grieving the losses that result from an illness or injury. During therapy with Marion, we focused on her personal strengths: her resilience, her humor, her motivation to keep trying without giving up. We also repeatedly talked through her feelings of loss and grief, while highlighting the truly exciting and delightful experiences she had enjoyed as a child. We focused on the meaningful ways that she strove to be herself, even under such difficult circumstances.

Marion felt she had a supportive alliance through psychotherapy, a relationship that helped her to cope in her own ways, and that allowed room for the full range of her emotions.

Final Questions for Thought and Discussion

What was your reaction to the author’s work with Marion?

How might you have worked similarly or differently with her?

What challenges have you experienced working with physically challenged clients?

File under: A Day in the Life of a Therapist, Musings and Reflections