How do you explain MS in one sentence?

Read how others with MS communicate with others about their disease.

I know that many of you have had bizarre conversations about your multiple sclerosis. I know this because I have had these types of situations myself. I also know because you told me about some of the most stupid or offensive exchanges in this article: MSers Respond: What is the stupidest thing someone has said to you about MS? 

Usually, my experiences haven’t been as bad as some of those that were shared in the article above.

Usually, when I tell people that I have MS, I usually get one of two reactions:

  1. “Oh, no. I am so sorry to hear that. My (neighbor, aunt's friend, great uncle, etc.) had MS and was in a wheelchair. He eventually became bedridden.”
  2. “What is MS, exactly?’

I can't really tell you how to deal with the first response, as I never know how I'm going to respond myself. Usually, I just think happy thoughts and say something about how I am doing okay.

The second response makes me think a little more. Most of these people sincerely want to know what MS is. Unfortunately, my responses tend to be rather dry and stilted. They go something like: "MS is a chronic neurological disease that is thought to be autoimmune in nature, but no one is quite sure - anyway, it causes demyelination in the central nervous system, which leads to a large possible number of symptoms, including fatigue, paresthesia, cognitive dysfunction and loss of mobility." Then I think that I am sounding too much like a textbook and I usually follow up with a lame "anyway, my feet tingle and I get really tired."

I asked some of you to share the ways that you explained your MS to others in a way that they understood. Here are some of the things you had to say:

  • I have to borrow my husband’s explanation of what he thinks MS is. He is older so he has the normal aches and pains he does not have MS. “It is probably like waking up one morning and having all the problems of getting old all at once.” This does sum it up, I have fatigue, thinking problems, balance issues. Older people get this slowly and I got it all at once.
  • I use to say that MS is like short-circuits in the fuse box that control all the functions in the body..
  • It’s like being in slow motion, thinking carefully to do everyday things like walking and talking.
  • If you think of your spine as a neurological highway…mine has speed bumps!
  • I learned that a great percentage of people do NOT know a pinch of medical terms and of body parts and their functions, so I stopped providing an accurate definition about what MS truly is. It is especially frustrating when people tell you, “Oh, I have the same thing!!!” My definition of MS to people is: a condition where your immune system (what protects you from illnesses) thinks (because you do not have anything) you have a bacteria or virus in your brain and it attacks it, affecting your whole body.
  • It’s when you have problems with your brain telling the rest of your body what to do.
  • I say the brain and spinal cord work like a super highway. Say I want to drive from Vancouver to LA – am determined. Most people book it straight down the I5, while I’m fighting a war. There are potholes, cracks, bridges blown out, etc. so I need to work around the detours and be creative – I still get there, it just takes longer. More than a sentence but short and they get it.
  • I use the old “frayed electrical cord” explanation! It seems to work for all ages.
  • When I took my car to the repair shop for a turn signal that sometimes worked and sometimes didn’t work, I was told that the wiring had a small crack in it that made the electrical circuit malfunction. My response? “My car has MS!” My mechanic blinked a couple of times and then said “Exactly!”
  • “Rats in the attic.” That’s the expression I use to explain how sometimes you turn the light switch and it works, and sometimes it doesn’t. And then I explain everyone’s MS is different. It’s like thousands of different diseases.
  • After a long day in illustration class yesterday, I said to someone, ”It’s like I’m walking at the bottom of the deep end of a pool trying to also see through the chlorinated water.”
  • Once I said, ”I’m like a computer left out in the heat. The hard drive is sluggish and it takes longer for apps to open.”
  • I look at my MS as being like “Let’s Make a Deal.” When I wake up in the morning l never know which curtain my body will choose to be like.
  • I try not to get too technical. I do tell folks my immune system is TOO good and it attacks itself. This has made it harder for signals to get from my brain to, say my hands, or feet or eyes. I follow up that I have been on a disease-modifying drug that tones down the body’s self-attacks for over five years and am doing well right now.
  • I tell folks that nerves are like wires. In my case, the insulation is getting worn away, causing short circuits. So, when someone tells me I have “my wires crossed,” I tell them they are probably right.
  • I describe MS simply as an inconvenience. That way I don’t further have to discuss or give my time away to the darn disease.
  • Hit by a truck while having a tequila hangover!!!!
  • I tell people that each morning my brain picks a spot on my body at random and short-circuits it, just for laughs.
  • Just the other day my grandson (who is knowledgeable about cars and all things mechanical) wondered why I had some of my symptoms, I said its like one leg has a full tank and the other leg has only two gallons. When the gas runs out only one leg works well.
  • MS is a potty mouth disease. All of the synonyms, nouns, verbs, adjectives, adverbs, and pronouns are curse words and today is one of those days. MS saps your energy your vitality and your strength. 
  • MS uses my body for a playground and causes random, multiple malfunctions of all the rides and toys.
  • One sentence for MS that I use a lot, as I learned from my doctor: MS is faulty wiring.
  • MS is like having every piece of your body and every organ of your body wrapped separately in Saran Wrap…some days the Saran Wrap loosens a little on some areas and those body parts and organs function better; some days the Saran Wrap stays tightly wrapped on some areas and those body parts and organs are unable to function the way they should.

Bottom Line: Logically, I wouldn't expect for everyone to know what MS is. However, trying to educate everyone that we come into contact with about the disease can be 1) a drag for us, and 2) a drag for them. Many of the suggestions above can be used to move the conversation along in an effective manner without offending the listener. Take your pick and try a couple of them out...

Read more:

What Does It Feel Like to Have Multiple Sclerosis?

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