There is a huge omission in a number that Dan and I often include in our essays about Multiple Sclerosis.
When we state that there are nearly one million Americans living with MS, this takes into account the people who are formally diagnosed with different forms of this chronic progressive disease of the central nervous system.
But do you know who isn’t included in this population? The caregivers.
MS is scary, frustrating and life-altering. Dan and I know this firsthand because each one of us lives with MS, but we also see how the illness effects our loved ones and how quickly loved ones can become caregivers as the disease progresses.
Think about it: if every person living with MS has at least person who provides some level of care, this means that there are an additional 1 million other people who also are dealing with the challenges of Multiple Sclerosis.
With a population of this size, it’s unfortunate that there isn’t much research available to know more about the day-to-day realities that MS caregivers face, such as what are their fears? Where do they turn for support? Who’s listening to their direct concerns? How do they not get overwhelmed? How do they maintain their health while caring for a loved one?
New way for MS caregivers to get involved
A recently released survey from iConquerMS is available for MS caregivers to share their input and provide perspectives as iConquerMS moves forward with including this segment more intentionally as members of the MS community. Dan and I are grateful for the opportunity to serve on this iConquerMS steering committee with other MS caregivers, people living with MS, healthcare providers and researchers.
iConquerMS is a virtual research community for people affected by MS, created and maintained by the nonprofit Accelerated Cure Project.
Dan and I both have MS and serve as each other’s primary caregiver. But there are spouses, parents, children and siblings who don’t regard themselves as caregivers even though they provide care for a loved one living with MS. That’s why for this survey, the “… definition of a caregiver, or care partner, is a person who provides unpaid support including physical, emotional, logistical, or social, to a person living with MS.”
Dan and I often say that it’s important to be your own best advocate. The best way to do this is to participate and share your story. This is why we’re encouraging MS caregivers to complete the MS caregiver survey. It’s an incredible way for those who care for people living with Multiple Sclerosis to get their voices heard and have a place at the table in conversations about MS.