Things NOT to say to someone living with multiple sclerosis
We use words every day to communicate our opinions, frustrations, anger, appreciation and love. Many times we don’t even pay attention to the things we say or how we say them as the words tumble out of our mouths quicker than we can actually think. Those words have the ability to bring hope, tenderness and support, but they can also be used to condemn, attack and ridicule.
Occasionally the words people use when trying to help a person living with Multiple Sclerosis, hurt more than help. It’s my hope that those times happen unintentionally, but they still happen. In their attempt to do something soothing by passing on a few words of wisdom, those words come across more like a punch in the gut or a jab to the heart instead. So, just in case someone would like to know the words that hurt, pass this list along.
Things NOT to say to someone living with Multiple Sclerosis:
- You don’t look sick.
- You shouldn’t drink diet coke.
- OMG, this diet I’m on cures MS.
- OMG, this vitamin will leave you symptom free.
- Aren’t you gluten free? You should be.
- Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS.
- Well, aren’t you taking your meds? (Yes….) Then why is your MS bothering you still?
- Are you contagious?
- You shouldn’t eat meat.
- What did you do to get MS?
- My aunt had that and now she’s dead.
- If the heat bothers you, don’t be in it… or move.
- I heard a vaccine caused it.
- Why are you dragging one of your feet?
- You need to get out of the house more.
- Maybe if you exercise more.
- Well, if you’re in remission, why are you on meds?
- That celebrity with MS seems just fine, why aren’t you?
- Are you sure it’s MS? How can doctors be so sure?
- Stop using MS as an excuse. You can’t feel that way ALL the time.
- Maybe you just need to try a little harder.
- Why don’t you try a different medication that doesn’t cause so many side effects?
- You seemed fine the other day.
- Why are you always so tired? You slept ALL night.
- Oh, trust me, I know EXACTLY how you feel!
- It really can’t be that bad.
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I don’t think people say thinks like that out of mean-ness ,I think they say it out of ignorance.People say the most unappropriate things in a lot of circumstances,deaths,births,marriages anything personal that they have no clue of the hurtful things they say,all we can do is politely explain ms and chronic disease.or I would explain it but I don’t have time.maybe they would take the hint.I try to think of the things given me with ms instead of what it has taken,not the easiest things,to learn, humility,patience,thankfulness,appreciation for beauty and good days they are gone too quick,the question of what tomorrow will bring.We are brighter than we give ourselves credit for,oh,the shuffling of schedules because we really can’t make it,dealing with all the insurance issues,rescheduling social events and the lists goes on.never know what kind of day it will be when I awake,I don’t have anymore brain space for peoples remarks to be allowed to enter.
MS is certainly its own kind of hell. It joins several other chronic ailments in that it’s not always obvious, leaving affected people subject to The Attack of the Ignorant. I don’t have MS, although two close friends do; I have deterioration of the spine coupled with osteoarthritis. I can walk…sometimes. I can even dance…sometimes. But never very far or for very long..and seldom without pain either during or shortly after. My doctor agreed that I needed a handicap permit, and I got one.
It’s my choice whether to enjoy the temporary privilege of movement and its companion price or not, and that varies day to day–sound somewhat familiar?
So one day my husband parked our van, took out my scooter and we went shopping. Even in the scooter there’s pain issues, so I was hurting when we went back to our car. He was putting the scooter in the back while I made my unsteady way to get in. That’s when some Yahoo honked at us (in full view of our Permit) and yelled, “YOU CAN WALK YOU FAKER! GET OUT OF THAT SPOT AND LEAVE IT FOR SOMEONE WHO NEEDS IT!”
MS patients know all about conditions that aren’t always visible.
My Neuro likes to say “use it or loose it”. Leaves me feeling insufficient!
Sounds like you might need a new neuro. I think you should use it when you CAN.
You’re soo right… heard them all at one time or another…unfortunately they continue ..now I just smile and say ” that’s great thanks for info” 😉
well said.
I would add
‘when did you get it, you were fine last week’
‘you’re doing so well, I really admire you for doing so well’
well that’s nice, only person who should be proud of me is me, and I feel I fail too much of the time.
My husband’s uncle (who we rarely see and dont really enjoy) came up to me at a family thing and said, right out of the blue, “so hows the MS?” Not how are you or anything. I wanted to punch him. Use some tact! Your list is great!
Its not up there, but I hate. Hows the leg. As if that’s all I have going on. They have reduced MS to a limp.
Good Morning. Early Happy Bunny Day. My favorite…..”You don’t look sick.” My reply “You don’t look stupid.” Have a nice day. We humans, what a group. Be well.
Good to hear from you Carla. I hope you have a wonderful rest of your day. xoxo
When that bothers me a lot, “wow, I’m faster than you now.” I hear this and think yes I have MS. What is your excuse for being a ride?
The same person who tells me I should not drink Diet Coke also tells me I should smoke marijuana.
So many opinions ugh! xoxo
OMG!!! you just made my morning and also got me all wound up—HAHA
your list is spot on. like tiffany, I too will be printing this list out. I’ll keep a few copies in the car, my pocketbbook, when i find a job- in my desk (wish I had this for my last job) and of course at home.
It’s time we all take a stand for ourselves and “educate” ( i state put people in their place) people.
If they have no filter or empathy, they deserve to be given this list.
This list will be my secret superpower to deal with the above type people. I seriously feel like wonder woman.
As always thank you for taking the time everyday to brighten our days. You are an angel and I wish you many blessing-Holly
Glad it helped Holly. xoxo
Penelope so so true 😊 I love this list if people only understood and people in my immediate family so I guess I will print this and leave it around the house… 🤔😀
xoxo