Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


Mama’s not faking … or bellyaching.

People with similar health challenges tend to share their stories with one another. I frequently experience this, both online and in person.

This week, I received this message from an MSer’s mom. (Let’s call her Annie.):

Hi. I am a mother of a wonderful daughter with MS. I need your advice. Help. My daughter has children who think she is using MS as an excuse for everything. They are mean to her, although not in front of me. How can I make these kids realize how much they are hurting their own mother?

This message gave me an idea.

As fellow MSers (and loved ones) share questions about life with MS, I’ll try to respond. I make no promises or pretenses about having any insider or expert medical knowledge. But I may be able to share similar experiences, lessons from life and research, and a whole lot of empathy. 

Maybe it’ll help someone, raise someone’s spirits, or start a constructive discussion.

So let’s look at Annie’s concern.

First, I gotta say it: Annie, you are not alone in this. The “You must be faking it” assumption seems to go along all too often with multiple sclerosis – particularly Relapse-Remitting Multiple Sclerosis (RRMS).

Why? Because RRMS comes and goes. That’s pretty much it – by definition.

So, our weird and annoying and exhausting and frustration and often disabling MS symptoms may be in full force one day and fairly invisible another day. Or they may stick around for days, weeks, or months.

Maybe that’s hard for onlookers to understand. It may be even more incomprehensible to those closest to us.

But maybe that’s not our problem. As MSers, most of us are still trying to understand it for ourselves.

Here’s my little spiel – for those who may question whether MS is real.

MSers, feel free to read bookmark this page and read any or all of these statements to your loved ones, whenever the suspicious eye-rolling begins.

  1. MS is real. My symptoms are real, even if they don’t bother me all the time. When they happen, they can knock me flat.
  2. Just because I do not complain constantly about MS, it does not mean the condition does not make me uncomfortable or cause me problems.
  3. My MS symptoms are not a convenient excuse to get out of chores, work, or other responsibilities. In fact, MS is really not convenient at all.
  4. Yes, I may look like an overachieving powerhouse of energy some days. That does not change the fact that I may fizzle unpredictably on MS days.
  5. No, there is not a pill I can take to make my MS symptoms go away. Usually, I just have to wait them out and hope for the best.
  6. Did you know that stress can aggravate MS symptoms? That’s why your understanding and encouragement can really help a lot, especially during flare-ups.
  7. Let’s make a deal. If I don’t whine about MS, how about it you don’t whine about the times I may choose to sit out an activity?

What would you say to Annie that might help her and her daughter to instruct the children about their mother’s life with MS?

1899 image
 from Hans Christian Andersen Fairy Tales
public domain
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