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Things people say to people with ME that don't help and sometimes discourage.

Blog entry posted by RestingInHim, Jun 22, 2013.

....and the responses we restrain.

"GET SOME REST". This depends on your definition of "rest" and the timing of the comment.
> If in the midst of a crash...when we are debating if risking a shower today is worth it...or even possible...and, though we are forced into a horizontal existence, rest alludes us...hearing "Get some rest" tells us those who say it just don't get it. So...we half-smile and say, "Thanks"
> If not crashed...and, having carefully weighed the potential risk-reward of our current activity, we have chosen to participate in life...we want to scream, "Do you have any clue how much I weigh every thing I do...from attempting a shower...to watching tv....to reading a book...to writing on my computer....to immersing myself in the pool and moving in the least painful way possible for me...to doing at least one load of laundry...to spending time with family...to having lunch with a friend....to shopping for necessities...to slowly and methodically attempting to clean out the disorganization in my house because it is choking me and leading to restlessness...to a day at the beach...to watching my grandkids for one of my daughters...to an evening out for dinner and a movie...to becoming exhausted just weighing my options, or lack of them...because regardless how I may look today...it takes all my strength to do anything and as I'm doing it my emotions are zapped by the concern always in my mind, 'Will this lead to a crash...and how long...how painful...will it be?' And then there is the constant emotional toll of risking disappointing, or even losing, those with whom I have to cancel plans at the last minute AGAIN...as well as the pressure that drips against my sense of responsibility that, 'If I can do this activity, shouldn't I be working to contribute to the financial need in my household?.'"
> If we are not discouraged, crashed or otherwise, because by God's grace we have embraced by faith that Jesus is our Rest...we simply say, "I am at rest"

"TAKE IT EASY". "Really? Define 'easy'."

"PERK UP NOW". "I haven't been perky since 1993."

"MY FRIEND HAD WHAT YOU HAVE AND SHE IS DOING SO WELL NOW SINCE SHE (fill in the blank)."
or, the ever-comforting.. "I USED TO BE FATIGUED TOO TILL I (fill in the blank)."
a) STARTED EXERCISING
b) SLEPT LESS
c) SLEPT MORE
d) GOT OFF ALL MEDICINE
e) TOOK THESE (EXPENSIVE) SUPPLEMENTS
f) JOINED A SUPPORT GROUP
g) SAW THIS DOCTOR
h) HAD PHYSICAL THERAPY
i) HAD PSYCHO THERAPY
j) HAD OXYGEN THERAPY
k) GOT A HOUSEKEEPER
l) STARTED TAI-CHI
m) STARTED MEDITATING
n) STARTED DRINKING WINE
o) WENT GLUTEN-FREE
p) WENT SUGAR-FREE
q) WENT FAT-FREE
r) WENT CHOLESTEROL-FREE
s) WENT MEAT-FREE
t) WENT DAIRY-FREE
u) WENT SODIUM-FREE
v) WENT ADDITIVE-FREE
w) WENT CHEMICAL-FREE
x) WENT ARTIFICIAL SWEETENER-FREE
y) WENT TO THIS INCREDIBLY EXPENSIVE RE-HAB
z) WENT TO THE COUNTRY/THE BEACH/EUROPE FOR A YEAR TO REST
...to which I reply..."I appreciate your concern. Over the course of 20 years I have either been there, done that or have considered that, but didn't think it wise."

"CAN'T 'THEY' FIGURE OUT WHAT IS WRONG WITH YOU AND FIX IT?" No comment.

And the ultimate bad comment.....
"YOU TAKE CARE OF YOURSELF NOW. IF YOU DON'T HAVE YOUR HEALTH, YOU DON'T HAVE ANYTHING."
to which I respond...depending on my current state of heart....
a) "That about sums it up" or...
b) "I have much...eternal things that illness cannot take from me and that being ill has magnified for me."

In tough days...weeks...months...I do best emotionally and spiritually when I apply Elisabeth Elliot's counsel to...
1) Offer my pain to God (whether physical, emotional, or relational)
2) Praise God at all times
3) Do the next thing He leads me to do. (Sometimes rest is the most productive thing to do)
SickOfSickness likes this.
  1. southernwonder
    It is so difficult when people say those things. I want to smack them but offering my pain to God is a much better response :)
  2. RestingInHim
    Thanks for listening...and hearing!
  3. PNR2008
    Everything you say is true. My mantra has become "God Help me". If it comes in 5 minutes or 5 seconds I usually need it now. I can't stand in the shower and I go food shopping at night because I can't take the heat. The house disoganization disrupts my sanity.