We Have to Make the Effort to Care

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by Jamie Hughes |

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Living with multiple sclerosis (MS) is hard.

I know this is hardly a revelation, especially to those of us who struggle with it on the daily, but I felt like it needed to be said. I was scanning through articles on this site recently, seeing what my fellow columnists are up to and checking out the latest research and survey results, and I couldn’t help but notice a trend. People are suffering, and a lot of them are doing it without any real support system.

MS affects everything from our physical well-being to our emotional and social balance. It hinders our ability to work, to contribute to society, and even to take care of ourselves. According to an article by Marta Figueiredo, PhD, which presents a highly informative summary of findings gathered by the MS Trust, “Many patients were not receiving the support they needed, with 88% of them reporting they feel unable to cope with their MS some or all of the time.”

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Eighty-eight percent is darn near total in my opinion. Basically, 9 out of 10 people are struggling to keep it together now that MS is a part of their lives. We must do better than this — for ourselves and for one another.

The article goes on to say that “nearly two-thirds of respondents to the online survey stated they needed more support managing their fatigue, 45% wanted more help with managing their mood or emotions, and another 45% with the cognitive impact of MS.”

Each one of those numbers is entirely too high. Fatigue, mood swings, and cognitive impairment are all common problems, something we all face at one time or another, so why are so many people struggling to find the help they need to navigate life with MS?

I think the answer lies in the last result the survey detailed: “Half of the patients also wanted more support to help other people understand MS, because the ‘invisible’ nature of many MS symptoms ‘can make the impact hard to communicate to others, even family members or work colleagues.’”

People don’t think to help because they don’t understand. Ours is not a disease that holds up a gigantic neon sign. It doesn’t beg for attention, and we all know that unless a problem is too big to ignore — unless it is up in everyone’s face — nothing will be done about it.

This is why I always encourage my sons (and anyone else I come across who seems bent on ignoring the suffering of others) to strengthen and hone their sense of empathy. And yes, it’s absolutely possible to do so through formal training! It’s not always simple and will sometimes make you uneasy, but being able to feel for and reach out to others in need is totally worth any minor discomfort you might experience along the way.

Being empathetic not only makes us better spouses, friends, relatives, and employees, it also — according to researchers like Paul R. Ehrlich and Robert E. Ornstein — is the solution for many of today’s most crucial social problems.

So if you’re an MS patient struggling to explain what you’re going through to the people around you, pass along some of these links. Help your friends and family understand. I know it’s hard. I know it requires energy you likely don’t always have, but the only way others will learn is if we make them see.

And if someone in your life is struggling, take the time to understand what he or she is going through. Ask questions. Imagine life in his or her shoes. Identify areas where you can help, and then step up and do it! It’s only by truly loving and giving of ourselves to support one another that we will, as Prince once said, “get through this thing called life.”

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Marjean avatar


What are the side effects of Covid 19 vaccinations on MS patients?

Jamie Hughes avatar

Jamie Hughes

I haven't heard of any negative ones personally. (I'm vaxxed and boosted.) I'm sure there are many columns and articles here on this site focused on that very topic that you could read. Just use the search function at the top right of the page!


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