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.
- 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.
- Just because I do not
complain constantly about MS, it does not mean the condition does not make
me uncomfortable or cause me problems.
- 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.
- 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.
- 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.
- 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.
- 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?
Image/s:
1899 image
from Hans Christian Andersen Fairy
Tales
public domain
