Life with MS

MS and Caregiving: What's Luck Got to do With it?

By Dan and Jennifer Digmann

Our friends who are living with multiple sclerosis call us lucky. This is because we both have MS. And with this, we each have a spouse and a caregiver who can understand, relate, commiserate, empathize, and sympathize with what it’s like to face this unpredictable disease on a daily basis.
Jennifer was diagnosed in 1997, has secondary-progressive MS, and can no longer walk. Dan was diagnosed in 2000, has relapsing-remitting MS, and still climbs stairs at work. We met at a MS-related event in 2002, fell in love, and got married three years later.
We just celebrated our 12th anniversary of wedded bliss in September, and we truly are blessed to have each other.
But are we lucky because we both have MS?
Yes, but not always.
For example, Dan knows what it’s like when late-day fatigue sets in and MS prevents Jennifer’s hands from grabbing her silverware to feed herself. Likewise, Jennifer knows what Dan means when he talks about stopping to rest because his legs got weak as he walked across campus while working at Central Michigan University. 
Never is there judgment. Never are there feelings that the fatigue, weakness, and lack of ability is “all in your head.”  We both get it because we both have it.
Then there are the times when all the understanding in the world won’t fix the situation we’re facing. Like the time earlier this year when we were all set to fly to New Orleans to serve as the keynote speakers for a MS event. We made it to a hotel close to the Detroit airport so we could make an early morning flight to the Big Easy.
Dan started running a fever and got sick to the point that he could barely walk. He could no longer help Jennifer stand to transfer in and out of her wheelchair. We were stuck in the hotel bed and had to cancel our trip. Apparently, the luck that comes with us both having MS runs out from time to time.
The reality is, when living with MS, luck has nothing to do with maintaining positive relationships with our spouses or caregivers. The caregiving relationship is strengthened through constant communication and two-way empathy.
Constant communication
Subscribing to the idea that “Silence is golden” has the potential to bankrupt any caregiving relationship, especially when it comes to the invisible nature of MS symptoms. It’s better to invest in talking, explaining, and describing what you’re experiencing with your MS.  But, it’s just as important to diversify your caregiving relationship portfolio and ask your spouse and caregiver what they’re experiencing. Listen to where they’re coming from. See how you can strengthen each other in this shared challenge.
Two-way empathy
It’s easy for those of us with MS to feel that others just don’t understand what we’re going through. Chances are, they probably don’t. But, by the same token, can they also say we don’t understand what they’re going through as the spouse or caregiver of someone living with MS?
Take the time to put yourselves in the shoes of others while they walk or roll a mile in yours. This can help to make facing the challenges of MS more like a shared attack against a common enemy, rather than one-sided battles for understanding between two members of the same team.
Are we lucky that we both have MS? Not really, because luck leaves too much to chance and gives us little control. Rather, we think of it more as giving ourselves the power and agency to control our caregiving relationship through communication and empathy.
We’re wishing you all the best as we collectively move forward with our lives with MS and the shared relationships we have with our spouses and caregivers.