What do you wish people knew about living life with MS?

There is often an unspoken understanding among people who have been diagnosed with MS, but it can be quite difficult for those without this condition to fully comprehend what day-to-day life is like for someone with MS. The effects of MS are far-reaching, impacting individuals physically, cognitively, and emotionally, with symptoms often unseen.

We asked the MultipleSclerosis.Net community what they wished people knew about what it is like to live with MS and to share some of the common misconceptions associated with this condition. More than 300 responded with insightful feedback. Here is a summary of the responses we received from our community members:

 MS is real, not an excuse:

  • No one chooses to have MS, nor can we control how it affects us
  • Not all MS symptoms are visible; you may look okay on the outside, but feel like you are falling apart on the inside
  • People often make the assumption that we are faking our symptoms or that we are hypochondriacs because they can’t see what we are experiencing
  • The limitations associated with MS aren’t necessarily visible, and it’s not possible for others to push us past our own limits
  • MS can be both extremely painful and exhausting, and at times we just need to rest

MS is unique to each person and is not predictable:

  • Every patient experiences MS progression at a different pace; it is not a “one size fits all” condition
  • Symptoms can change daily, or even hourly
  • Having MS can be a roller coaster ride with ups, downs, twists, and turns, but there is nothing fun about it
  • It is impossible to understand what it is like to live with MS unless you actually have it
  • It may seem like MS is trying to take away your self-worth every day by slowly making you unable to do the things that you were able to do yesterday
  • Even if yesterday was a particularly difficult day, today may be better
  • MS can knock you off your feet – literally and figuratively

It can sometimes be both stressful and depressing to have MS:

  • MS can take away our dignity by slowly and quietly taking away our mobility and cognitive thinking
  • MS is a multifaceted condition that can be incredibly difficult to live with; it not only affects us physically, but mentally and emotionally as well

The effects of MS are constant and can impact more than just the individual with the diagnosis:

  • We never stop thinking about our MS, even when we are feeling well
  • MS diagnosis can be devastating, affecting both the patient and his or her loved ones
  • We need our friends and family to be open-minded and understanding

There is no cure for MS, but it is not a death sentence (and can make you stronger in many ways): 

  • There is a continued need for research with the hope of one day finding a cure
  • There is no miracle potion that will cure MS
  • MS doesn’t change who a person is, but it can change what a person is able to do
  • Hearing a doctor tell you that you have MS can be incredibly frightening, but over time, people with MS are able to educate themselves about their condition and face it head-on
  • MS isn’t always debilitating
  • It is not contagious
  • MS is associated with many challenges, but these challenges can ultimately make you stronger

What do you wish people knew about MS? What do you think are the most common misconceptions about MS?

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One thought on “What do you wish people knew about living life with MS?

  1. I would like to know how many neurologists have ever been diagnosed with M.S. There has to be at least one. Why don’t they write a book, or talk about it to the general public with M.S. I want to know what they thought about M.S. Prior to getting it, and what they think now that they have it!

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