Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question 💭
Rocklin, CA

When asked, I tell people that it is a disease that causes my immune system to go haywire. Because the Immune System is confused, it attacks my Central Nervous System. When this occurs, it causes damage to the sheath around the nerve(s). Then I ask them to think of in terms of electrical wire that has the rubber coating over it. If the coating of the wire is damaged, it can cause the wire to short out. It's the same thing. They get it every time!

August 10, 2013
 · 
Reactions

Answer Summary

Members shared dozens of creative analogies for explaining MS to others, with the electrical wire with damaged insulation being the... Read more

Members shared dozens of creative analogies for explaining MS to others, with the electrical wire with damaged insulation being the overwhelmingly favorite comparison because it helps people understand how nerve signals fail to transmit properly. Several members also described using the spoon theory to communicate energy limitations, comparing fatigue to running out of daily reserves, wearing a soaking wet blanket, or hitting an invisible wall that makes staying awake impossible. A recurring theme was the frustration of facing skepticism or misunderstanding from loved ones, medical professionals who deny that MS causes pain, and people who assume all MS experiences are identical, with members emphasizing that knowing one person with MS means you know exactly one person with MS because symptoms vary so dramatically from person to person.

A MyMSTeam Member

If you have eye problems tell someone it is like putting mayonnaise on your glass lens and then smearing them. If you have heavy legs tell them that it is like you have 100 pound weights tied to your ankles. I also use a handicap sticker and sometimes people will stare at me,my neuro told me to tell them "I will trade the handicap sticker anytime for a cure for my MS." Hope these help a little bit.

August 11, 2013
A MyMSTeam Member

The "Spoon Theory" has to do with your energy reserves. The reserves are "counted" in spoons. If you're resting for an event coming up, then you're "saving your spoons". When you feel your energy getting low, then you're running out of spoons. Get it?? :)

August 14, 2013
A MyMSTeam Member

I say my body is having a civil with it's self, and I'm loosing

August 10, 2013
A MyMSTeam Member

I tell them PPMS is like dying very very slowly. Most people die all at once, so they never have a chance to get used to it. By the time the lights go off for me, I'll have had years to warm up to it. Also, I get a tag that lets my wife park close to the store when it rains. Best disease ever.

March 13, 2014
A MyMSTeam Member

I don't use just one explanation, because it depends on whom I'm speaking. The electrical wiring is the easiest and the one I mostly use. However, for those "genius" know-it-all people... I feel the need to explain it in scientific terms. Mostly, to let them know that I'm very certain of my disease. Yes, I've heard of bee stings. Yes, I'm aware that there are natural treatments.... and on and on and on. It gets tiring. My Mom(has MS and my little sister, too) explains it like this: Remember how you feel when you have the flu. The aches and pain and fatigue. Well, that's how us MSers feel all the time. Our bodies are always fighting a flu that isn't there. And, unlike you, we can't get over our "flu!" That's mom's way of explaining it. For me, it depends on the one inquiring, though.

March 13, 2014

Related Questions

View All