Apathy: How Our Care Partners See Us Differently

Do you consider yourself apathetic? Does your care partner?

A study published in the journal Neurological Sciences shows that people with multiple sclerosis (MS) and their caregivers often perceive apathy in the person with MS differently.

The researchers surveyed 160 people (or 80 pairs) where one of the pair had either relapsing-remitting MS or a progressive form of the disease. Both people were asked about apathy: Those with MS were asked about their own apathy, while the carers (typically spouses or family members) rated the perceived apathy level of the person with MS.

The carers also filled out surveys measuring stress, coping strategies, and personal burden.

The researchers state, “Caregivers consistently reported higher levels of perceived patient apathy than PwMS [persons with MS], particularly in terms of behavioral apathy.” According to the study, “Behavioral apathy is characterized by a significant reduction in initiative, participation in daily activities, hobbies, and social interactions.”

The researchers continue, “Notably, higher levels of emotional apathy in PwMS, as perceived by caregivers, were strongly associated with increased psychological distress and burden.” “Emotional apathy” is characterized by feeling indifferent, or emotionally numb.

“Furthermore,” the researchers say, ”caregivers relying on maladaptive coping strategies experienced significantly greater levels of emotional exhaustion and role strain related to caregiver-reported patient apathy.”

We Don’t Always See Ourselves Clearly

This research reminds us that those close to us sometimes see the effects of MS in us before we perceive it in ourselves. It also underscores that there can be a difference between what we say we’re feeling and what others perceive that we are experiencing.

In short, we might think we’re coping better than we are — and those around us see it better than we do.

And how we think we’re doing versus how we’re presenting to our partners is having a direct impact on their levels of stress and concern.

Considering the line about our partners relying on “maladaptive coping strategies,” I have to say I’m a bit concerned that our partners aren’t given access to coping skills required for their own health while they’re looking after ours.

How Can We Bolster Our Caregivers’ Emotional Health?

I’m certainly not trying to lay a guilt trip on any of us living with MS. What I am suggesting is that we might want to consider that those who care for and about us are an important part of our care team. We should probably ask our MS team about getting them some help in acquiring skills that would be good for them. The stronger they are for us, the more real we can be with ourselves.

That’s what I took away from reading this study. I’m probably not being as honest with myself as would be best for both my wife, Caryn, and me. And as there’s a new puppy in the house (the pack is back!) we’re both going to need to be at our best. The two wheaten terriers have taken to using the household furniture as a parkour training ground — no apathy in the way they live their little lives!

Wishing you and your family the best of health.

Cheers,

Trevis