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Living with MS: Sometimes One Really is the Loneliest Number

By Vicky Leavitt
May 15, 2022

As a neuropsychologist and neuroscience researcher, I have been studying the brain for over a decade, with a strong focus on multiple sclerosis. I’ve gotten to know a great deal about MS and the people affected by it. One recurring theme I have heard people living with MS share is, “I feel like no one really understands what I’m going through.” As human beings, it is so essential to us to be seen, heard and understood. So many aspects of MS are not outwardly visible, such that the person living through it is often left feeling as though they are alone. But it does not have to be this way.

Resources that bring the MS community closer together to address the body, mind and brain as a unit are important for 5 reasons.

  1. Asking for help is a sign of strength. We do not have to subscribe to the cultural myth that going through it alone is the way of heroes, that rugged individualism is a sign of strength. The archetype of rugged individualism is, after all, the Marlboro man. And we all know what happened to him.
  2. We are better together. I like to say that the simple reason to engage in any kind of therapy can be summed up by a simple analogy: You cannot see the back of your head, but I can. MS is complicated, and you are not going to be able to think your way out of it. It doesn’t matter how smart, motivated, well-intentioned or determined you are. Other people will always have a different and often helpful perspective, a perspective that we ourselves cannot see. Just like the back of our heads.
  3. The therapeutic benefits of being in a support group are three-fold. First, your coach has MS-specific expertise. One thing I’ve learned from patients over the years is that explaining MS to a well-intentioned, but inexpert, therapist is exhausting (and sometimes frustrating). Second, the other people in your group are MS experts of a different sort – they are living with it. The wisdom of others cannot be underestimated. And the third level of therapeutic benefit is the benefit you gain when you turn your attention outward and offer your help to someone else. Science has shown that altruism is good for our health.
  4. Coming together in a space governed by mutual respect and trust supports us in being our best selves. I’ve learned this over time by watching it happen. People new to support groups often say things like, “Wow, this particular group is so special. How did that happen?” The simple fact is that every group I have ever had the privilege of working with is incredibly special, which has led me to the belief that when human beings come together in a space governed by mutual respect and trust, the connections that are formed are strong and profound, and we are supported in being the best version of ourselves that we can be.
  5. When we come together in a safe place where we are free to be honest, we find relief. Carrying the burden of living with MS is real. We sometimes shield even our closest loved ones from the full reality of the challenges we face and the pain we feel. In group, we have a place to let our true selves breathe, and we provide each other the supportive environment we all need to feel the relief that comes with being who we are.

In 2019, I formed eSupport Health as a resource for people living with MS and their loved ones to access high quality and much-needed mental health resources like support groups and personalized health coaches that are affordable and valuable. Life brings challenges our way, but we do not have to face them alone. Coming together in safe spaces governed by trust and mutual respect is the best way I know for facing life’s challenges, and for finding support to be the best version of ourselves that we can be.

Editor’s Note: Find resources to connect with your MS community on the Society website and explore online communities. eSupport Health charges a fee for weekly online sessions – monthly, quarterly and annual payment options are available.

Vicky Leavitt

Dr. Vicky Leavitt is a neuropsychologist and neuroscientist focused on understanding the cognitive and non-cognitive changes experienced by people living with MS. She is cofounder and chief scientific officer of eSupport Health and assistant professor of neuropsychology at Columbia University/NY Presbyterian Hospital in New York City. She plays cello in a trio with two radiologists and enjoys cooking things that her family sometimes refuses to eat.

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