Let's Talk Advanced MS: A Look at the Biggest Challenges

We know that living with multiple sclerosis (MS) and advanced MS comes with many challenges. We wanted to know a little bit more.

We asked our MS community their thoughts: "Living with advanced forms of MS can come with many challenges, to say the least. What would you consider as one of the biggest challenges?" and boy, did they share some hopeful and engaging responses.

The reality of advanced MS

Within this article, we will be sharing some of those responses and providing an honest look at the reality of advanced MS.

The uncertainty

"The uncertainty of making plans, knowing that how I feel now may not be how I feel tomorrow. I really dislike not being able to look forward to a cruise or a simple road trip."

It goes without saying that MS is unpredictable. Mixed with the right trigger, a flare is lingering around the corner. Living with uncertainty can be tough. Not knowing when your body might turn on you, or when your condition may show signs of progression. This is a big mental challenge that should not be taken lightly.

The loss of independence

"Losing my independence. I no longer am able to drive. Depending on walking assistance daily. Depending on others to complete and do the simplest things for me I can no longer do for myself any longer"

It is hard to accept the implications that come after a chronic illness diagnosis like MS. Debilitating symptoms and progressive disease can keep you from doing things that once seemed so easy. It messes with your sense of self. This challenge is a big one and often partnered with guilt.

Frustration, specifically with others

"Frustration with the behavior of others."

Having to answer questions about MS or even talking about the condition with loved ones can be uncomfortable and unnecessary. It is so important that people realize that MS is only a part of our lives. It is not our entire life. This type of frustration poses unique challenges and some strong self-acceptance.

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