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How do you explain multiple sclerosis to family, friends, & colleagues?

How do you explain multiple sclerosis to family, friends, & colleagues?

It’s difficult to explain any disease to someone who doesn’t have it, but it’s especially challenging to explain what it’s like to live with a disease that has symptoms that are not always visible on the outside. Many of the symptoms of MS cannot be seen by others. We asked our Facebook community how they explain MS to friends, family, and colleagues, and what has and hasn’t worked. Here is what several of our community members had to say:

I apply the principles of electricity to explaining my MS

  • My brain is like a bunch of wires and the coating is wearing off, so I just short-circuit all the time
  • Wires that have lost their insulation and they short out
  • I use the vacuum cleaner cord example. When the protection on the cord is nicked, it is like the myelin on the nerve being attacked by my own white blood cells. I say when a signal is sent to part of my body it doesn’t always comply because of nerve damage
  • I call it bad wiring that leads to fatigue and inflammation
  • My nerves are like the cord to a light. The plastic covering around the electrical cord is similar to my nerves/myelin. When the cord’s covering deteriorates, the cord could short out from being unprotected and not work. That is similar to what is happening to my nerves.
  • I tell them our nerves are like the wires behind the fuse panel in your house. There is a myelin coating that protects our nerves just like the protective coating that protects the electrical wiring. As long as there are no bare wires touching each other, all is good. Once that protective coating is gone, the nerves can arc out and the signal doesn’t get to where it needs to or is slower at getting there; functions either slow down or fail all together
  • I explain it like a cable wire to the TV, when it has nicks in it the signal is garbled and the TV picture is fuzzy. My body’s cable wire from brain throughout has nicks so when my brain tells my body to do something, the signal gets garbled and the directions are fuzzy so my body cannot understand and comply. The crazier the weather is or the more tired I am, the worse the reception is – just like a rabbit ear antenna for TV

It’s like a bad phone connection

  • It is like bad cell phone reception between my brain and my muscles. My brain sends the message, but my muscles don’t get the full conversation
  • It is like a game of telephone. My brain knows what it wants the body to do and sends the message. My body could do what the brain wants but gets a totally different message than the one the brain sent

No one can understand what it’s like to have MS

  • I don’t even try anymore
  • I stopped trying

The spoon theory

  • I explain MS with the “Spoon Theory.” It’s a bit long, but it’s worth the read
  • The spoon analogy works for me
  • The spoon analogy helps to explain the invisible illness is and how it affects daily struggle. This helps my daughter explain to her family and friends why she can’t do it all anymore

How would you explain multiple sclerosis? Please post in the comments!

Comments

  • Luckyone
    6 days ago

    I describe my perminate 80 percent vision loss from retro bubular optic neuritis in my tight eye. Left eye recovered. Hard to explain to people that it is like looking at a jig saw puzzle with most of the pieces missing in the middle…I am lucky because I was diagnosed at 19 and am now 68….had excellent doctors and treatment…I have sensory and slight balance issues which are easier to describe….what drives me nuts is when day “you don’t look like you have M.S’

  • Janus Galante moderator
    5 days ago

    Thank you Luckyone for your reply to this article by the editorial team. It IS difficult when you have something that’s hard to explain in the first place.
    I hear you about the “you don’t look like you have m.s.”
    comment!

  • Msblows
    6 months ago

    How I explain MS I have spark plugs what are lesions it’s like a car you have to have sex for drugs Lightning by the same time oh my spark plugs don’t wait anymore because every time you go into how it’s the right way they all get confused they understand that and if they don’t I bring it up and let them read it

  • nadazmd
    3 years ago

    I explain that the connection between my brain and bodies’ wiring is always doing it’s own thing. And that it affects each person differently then I joke about something so as to avoid anyone feeling bad about me having this disease. But I truly feel that life is a crapshoot.

  • HuskerHog
    5 years ago

    My brain no longer “talks” to to my body the way it should. MS is a lttle DIFFERENT for all those affected,depending on the communication pathways affected.

  • dan
    5 years ago

    All I know is family does not realize what MS is. It’s not cancer. I have a relative who has cancer bad. Been out of work less than 2 Yrs. and they run a benefit for him while I’ve been out for 7 Yrs. and no benefit for me , My bills are still coming in and I have expensive meds too but I guess MS is not a real decease . So try to explain it?

  • Estelle
    2 years ago

    It sure is a disease that I have lived with many, many years.

  • north-star
    5 years ago

    I have also used the wiring/myelin analogy and it seems to work. I often add that nerves can be affected anywhere in my body, people never think about the potential ubiquity of MS. I just looked up The Spoon Theory, I like it. I usually say I have a variable store of energy that doesn’t replenish itself. I like the visual.

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