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It seems we all know how to explain MS itself, regardless of whether others actually understand it or not. I'm trying to think of conditions most people can easily understand and use comparisons to that. For ex., you wouldn't force a diabetic to devour an entire cake. You wouldn't force fish on someone who has an allergy. If someone has asthma, you aren't making them run the marathon with you. Just because it doesn't make sense why their body reacts differently than yours, you simply understand… read more
How about it's like old knob and tube electrical in a house. It is frayed no longer passing any modern codes and causing some obvious and other very visible short circuits. These short circuits can be flighty short lived like a lamp flickering or they can be smouldering behind a wall ready to erupt and burn down the HOUSE. Your body is the house (that holds your soul) in this analogy. 😘Teach them!
@A MyMSTeam Member I find comments like that often the most frustrating. I can only imagine what I'd say or do if someone was minimizing anything while I was still dealing with an issue of that nature. Even my husband will say something stupid like "I thought you were doing better" when I say I'm tired or having an iffy day. Apparently the fact that I didn't feel that way days before must mean I was cured, so now I'm either lying about how I felt then or I'm just making excuses now. It's like we're only allowed to feel super good or super bad.
I was telling my daughter and son in law that my husband hasn't mowed the lawn in a while and my daughter said, "Why don't you mow it?" One day they seem to understand, the next not so much. Seems like most people would throw an acrophobic out of a plane and wonder why he's screaming all the way down.
@A MyMSTeam Member, I've definitely used those types too! Instead of the spoon theory (cuz who walks around with 20 spoons lol plus people don't comprehend how it could take one spoon to simply get out of bed), I use a gas tank for a car. Some tanks hold more, some hold less, but ultimately one is not able to travel as far. With MS, we have the tank that holds less.
I just feel like we all know people with other conditions that the average healthy person accepts and doesn't question, despite not even having it themselves, so using well-known conditions like that would make it more relatable to a non-MS person.
When my nephew was young, about 8, he had a puppy that chewed a lamp cord almost through (but not quite all the way). My sister was in the process of replacing the cord & I took the 'chewed' part. It hangs on my refrigerator now. When someone asks me what MS is, I pull down that cord & explain the insulation (myelin) is attacked by our own bodies' immune system & the copper (raw nerves) then can send mixed messages when it touches another damaged 'cord'. It is rudimentary, but children can understand it... It is a rather simple way to explain, but it does the job. My nephew, who is now 18, visits with friends occasionally & uses that to explain to others now. Educating the next generation is important. I also use that when I need to explain to adults who don't know what MS is.... As for the fatigue - I just tell them I need to sit down alot more than 'normal' people and I take a lot of really expensive drugs!
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