They just don't understand.....

[Sara2000]

I was talking with some co-workers the other day, who already know that I've had MS for a while, and I got on the subject of how hard it can be for me sometimes to get the right word out that I'm thinking of and how that's mostly due to my cognitive issues from the MS. Both of them made comments to the fact that no, that's not because of your MS - it happens to all of us - it's called old age. I started to refute the issue, but just gave up. Frustrating and disappointing....

[CalfeeChick CommunityAmbassador]

Sorry you have to go through that frustration. I was just diagnosed in August, but have had the word problems for a couple of years. I'm 68, hubby 72, we both transpose words and just smile and go ahead.. sometimes it just not worth upsetting yourself trying to change others thought, they just can't relate. Hugs, Lynn

[dmaskal1]

Sara200, I agree with CalfeeChick. I was diagnosed with MS, or demyelinating disease, in 1987, which I explain to people is like stripping the insulation of the wiring in your nervous system, including in your brain. I know the demyelination in my brain damaged with my word recall ability, my general memory, and my problem solving capability which led to my release on disability in 2000.

[Iona60]

I find myself describing the word I can't find. Ex: chair. The thing you sit on, has 4 legs, sometimes reclines. It's like I'm on a game show.

It's frustrating because people just don't understand.

[erash in reply to Iona60]

I've learned to do the same thing. Describe rather than get stuck on a word...although works fine in day to day conversation it had become a problem when searching for the name of a medication or diagnosis

[Iona60 in reply to erash]

Yes that would scare patients. You did the right thing by stopping. Now you can find things to do and enjoy life, like painting!

[erash in reply to Iona60]

So true Iona. Sometimes I find myself thankful for my MS which has now allowed me to now do some of the things I had put on the back burner. It has also given me a new way of looking at time --the clock face I adhere to now is like the Salvador Dali painting 😎

MS takes away but it also gives...not that I'd wish it on me or anyone else. Do while I can, right 😊

[jimeka]

I know what you mean Sara, I know a bus is a bus, but I can call it a train, even though in my mind I can see a bus, but my mouth begs to differ. So I just laugh and say "well you know what I mean" maybe you could have said"well in that case, what am I worrying about then" not many people want to hear about ms because 9 times out of 10 they are like us they don't understand it.

[Hidden in reply to jimeka]

Ladies, I totally agree with all of you. I think Lona60 had an absolutely wonderful idea. Why don't we start the first game show for MS patients calling it "Find Your Word" or perhaps we could call it " The Mystery Word of the MS"..... Got any other ideas????

Certainly we can come up with a lot of creative ideas here. Come on Jimeka and Jesmcd2, plus everyone else to pitch in and give us some real Zingers of ideas for our game show.

[erash in reply to Hidden]

Great idea MSFighter. It would be hilarious! Not only could We describe and make up words but we could lose track of the topic and go off on tangents when our minds became distracted. Or just leave the show when our brains said, "I've had enough. Time to close shop"

The winner is...

[Iona60 in reply to erash]

Or, we could have a back up MS person saying the correct word, like bus, when we have said train. Or a back up to the back up, that laughs and guesses the real word "car".

[Morllyn in reply to Hidden]

"What's my Word?"

[erash in reply to Morllyn]

I was thinking of the Jeopardy Game show: "Alex, the question is...oh crap, I forgot..."

Extra points awarded if you can remember the category 🤓

[Morllyn in reply to erash]

Ha Ha, like that!

[CalfeeChick CommunityAmbassador in reply to Morllyn]

What's my word? Today I took a sprinkler instead of a shower😊 But I know my MS family knows what I mean.

[Jesmcd2 CommunityAmbassador in reply to Morllyn]

Just call everything a "dog" day.

[Hidden]

Sara2000, it's MSFighter responding back to your post. I believe, when people respond back to your having MS saying they experienced similar symptoms but it's not due to MS somehow I believe they're trying to show you how much they understand. In other words they are trying to be very supportive of you. Yet we understand that unless you have experience MS first hand you have no idea of the depth it affects you.

Try not to take their replies as insults, instead realize it's stems from their lack of Education when it comes to MS. Next don't respond back and argue your point with them. It would be like talking to a stone wall. Instead pick up your tablet, smartphone, laptop and vent your frustration by talking to us. That way we can reply back and forth and come up with a lot of creative ideas on how to show them exactly how much they don't know about MS! Ha Ha!

[angelite]

Hi Sara,

I genuinely feel that many people, when they make comments like this, are trying in their own clumsy but well intentioned way to express empathy, make you feel less embarrassed about your memory or less worried etc. rather than claiming to know your exact position or trivialising your issues. I know it can sometimes come across as presumptuous or dismissive, so can lead to frustration ! So I would allow that while this can naturally occur in general ageing, it can be more severe in known degenerative brain conditions.

One thing I have noticed, brain dysfunction/nerve damage in all it's many forms from Brain injury/ degenerative conditions, psychological conditions and even natural ageing ( which is a form of degeneration, really ) can share a remarkable common ground in symptoms. Just as there are many places in which you can break a bone, end result being pain and inability to function ( hopefully with healing but often scarring ) so there are all areas of the nervous system that can malfunction, both physically and chemically, with similar end results. An MS patient can experience the same range of symptoms as a migraine, stroke, CP, Parkinson's, Dementia, psychological spectrum, spinal damage, MND, neuropathy etc. patient, there is so much crossover in the possible symptom combinations with malfunction of brain/spine/peripheral signals.

As an aside, I seem to continually mix up the word window with mirror - I'm thinking because they share the common theme of glass, reflective surface ? : ) Angela x

[agapepilgrim]

Sara2000 know what you mean! Was in Walmart yesterday buying cough suppressant, checking out with debit card, total brain fog blizzard! Could not remember pin number. Thankfully clerk said that's ok run it thru as credit. I broke down (no control nowadays), started crying, called my sister-in-law, who HAS been supportive and empathetic, so I wouldn't make a scene waiting for ride, and she said, when I want to remember something, I repeat it over and over til I remember it" I wasn't as wise as as you. I said, Jean, I have put this pin # in a machine probably a million times in the last 15 years! How many times would you like me to repeat it??? The nerve connections are gone!!! Don't you get it??? (No, - and they never will). I told my husband she needs to walk a mile in my shoes and then she would understand. He said, sounds like you need to take those shoes off! (I docked him in the stomach!)

[angelite in reply to agapepilgrim]

Agape pilgrim, I know that all the repetition in the world will not stop a person with cognitive issues from suddenly going blank on a familiar name/number etc. One method of carrying your pin number in your purse might be to disguise it - I wrote a fake shopping list with prices, that total to the number required. I was once asked for my phone number over the phone and had one of my aukward blank moments. Solution - write it on a piece of paper and tape it to phone/handset so it is there if you need it : ) x

[Hidden in reply to agapepilgrim]

Agapepilgrim, it's MSFighter, good for you! That sounds like a smart donkey (thats code for you know what!) remark my husband would make. I never deck him, instead, i gently reach up as to kiss him and then one hand dives in for chest hair showing above his shirt and proceeds to give it a tug. The strenth of my tug directly correlates to the remark he made! It proves to be extremely effective!

I wish they could understand that sometimes our state has been worked over by the embarrassment we just experienced and we're in no mood for being razzed. They can either experience something to sidetrack us like we just explained or they can experience our tears.

i would not wish MS on anyone....except, maybe for a month were they could litteraly walk the proverbial mile in our shoes. Keep your chin up lady, and realize you're not alone in this mental fog that envelops us due to our MS. One day i could not remember my zip code and i only lived here for over 28 years....oh boy ......

Here's an idea that has helped me. I keep a little notebook in my purse with lots of personnal data in it. Attach it to your purse somehow so you can't accidently leave it behind. Boy, that would be a disaster and an Identity Thief dream come true! I keep the family's checking account numbers in it, passwords, pin numbers, addresses complete with zip codes, etc. It's worth a shot even if you want to limit what you put in it. Thanks for sharing.

[Jesmcd2 CommunityAmbassador in reply to agapepilgrim]

agapepilgrim l can so understand where you are coming from. They ask for a zip code and lm completely oblivious. No clue as to what it is. Phone number? Are you kidding me? Let me look it up in my phone, ugh.

I'm glad you got your medication tho. That at least worked out for you Hang in there. And remember we are all losing our minds together

[Pistol]

I get those same comments ! And everyone says they are tired too and lose stuff and fall ! No they do not understand ! Tell them to have a look at your MRI or take the cog test with you ! It sucks There really is no way people can feel it unless they have it

[agate]

@Sara2000, I think your coworkers meant well. Maybe they thought that you'd be comforted to know that the kind of problem you were describing is also common in people as they age. Maybe they thought you were pretty frightened about having a disorder that does things to your brain, and it is scary--let's face it. They wanted you to feel as if they understood even though it came across to you as not understanding. I've found that if you give people the benefit of the doubt, and just assume they meant well, life is much easier. Sometimes, of course, they clearly are being malicious, but I don't think this was one of those times.

[erash]

Not to be oppositional here, because I do feel the MS word finding is worse or additive to the changes experienced with aging or menopause (as people are keen to remind us) but on 2 different occasions this past week, I was at events with women b/w 40 -80. None knew of my MS and several apologized for their memories and word finding problems.

1 yr ago while working with a physician who is a few yrs older than me, early 60s, he had word finding issues.

Their word fluency problems did make me feel more comfortable with my own...and made me wonder (only for a second) if they had MS too 😊

So no doubt it's a challenge, but perhaps more inside our heads than outside of them?

[Jbahnan]

Hello sarah, they just don't know ignore them and just move on. GOOD LUCK in the future!

[Morllyn]

I know what you mean but sometimes they may be trying to comfort you. Which ever it is, out of love, compassion or meanness, try and not let it bother you, that just causes stress and none of us need that!

This is coming from someone who really dislikes (HATES) when someone says to me, "You look perfectly fine to me." I am better at just smiling, or saying, "Thank you" now.

[mskleva46]

Hi Sarah. I go to an MS yoga class every week and when I mentioned to a new teacher that most of us MS'rs in the class have a weaker side - left leg and arm or right leg and arm. She said, "Yes, well everyone has a weaker side." It got me a little angry, but I didn't reply. Now that she's been teaching our class for a couple of months she gets it. Your co-workers just don't understand. It's just too bad they don't check online about MS and it's symptoms. My classmates and I used to go to a diner for lunch after the class. The waitress there took an interest and actually looked at the MS info on her computer and knew enough about it to converse with us.

[Karen-x]

I know exactly what you mean! Or if you say I have fatigue they say, oH I'm so exhausted too.

[Jesmcd2 CommunityAmbassador]

Hi Sara2000 it can be very disappointing and fustrating especially when you want to explain why this is going on with YOU, not them. I'm sure they meant no harm. In fact they might have been trying to put you at ease. Having noticed a bit. So chin up Sara and tell them that sometimes it feels better to talk to them about it.

[Jammer1969]

I'm sorry people are making comments like this to you. I know exactly what you are going through. My own husband will make comments like that. He has chronic pain and wants to always say his is worse. In my opinion, they are close to the same. I hate not being able to find the words and people jumping in to finish a sentence for me. I have people tell me it's because I am getting old all the time. I'm 47 and up until a year ago, I felt like I was still in my early 30's!

[jbix]

These are the same people that say,"Sure, I'm tired, too." I teach high school orchestra classes, where my kids know me and are empathetic. When I go into a different classroom, the kids can be mean - and I'm 41 years old!