Am I being a jerk?

[Ivy_Sprite]

When I'm talking to a family member, and I'm talking about getting so tired, or my balance being really off, etc... And they say, "Oh yeah, I get that all the time!" I seriously want to scream

Just this morning, in an email to my dad, I was telling him that yesterday was a really "slow thinking" day. I was forgetting what I was saying mid-sentence, couldn't think of words, and it was getting so frustrating trying to get my point across about anything all day. And he replied-and I quote, "I have those foggy days,too. Always have had. I think it has to do with blood sugar." I want to reply, but how? "I'm pretty sure you have no bleeping idea how frustrating this is or what I'm even talking about..." But he would take it wrong, and I would look bad, and whatever... I mean, what do you say? My MIL also says stuff like,
"Oh, I know what you're talking about. I can totally relate-believe me!" Excuse me, what?!

But perhaps I'm setting myself up for that kind of response just by bringing it up. So am I being a jerk when I can't handle their response? If I don't talk about how "things are going with my day" when they ask, I really wouldn't have much to say.

Looks like today is going to be another slow thinking day. This post took me a couple hours to put together lol...

So what do you say? Because I'm sure everybody has to deal with this to some degree.

[JerryD]

I get it ! You have a choice to make . I have experienced this for some time. It takes a lot of self-restraint to not become beligerant ! I always keep quiet. Bite my tongue, so to speak ! And, if you knew me, you would know that is tough for me ! I wish that I could offer you some words of wisdom . I got nothing! Good luck

[msgijo]

I get these too. The worst (for me) was when a neuro - ms neuro no less - told me how well I looked / was doing after over 20 years of MS dx .

IMO my dh has it correct when he says that even tho people always ask how you are doing they really don't want to know . So with that in mind, unless I AM talking to a doctor, I always answer in a flippant manner. Something like "Well I am vertical today" or in the summer "Well I haven't melted yet". That seems to satisfy their need to ask and my need to answer as well as letting the conversation move on to something else.

They cant help being ignorant about MS. And I normally don't have the time, energy or patience to explain . If they were actually concerned they would do a little research and could MAYBE understand some about what we go thru.

I still dont understand when the doctor had the gall to tell me that tho ..

[jreagan70]

But perhaps I'm setting myself up for that kind of response just by bringing it up.

Yes, that's exactly it. You started the direction of the conversation and the other person is just responding to what you said.

You have the right to say whatever you want to, but the other person has just as much right to say whatever they want to. You're not being a jerk, but you're being unrealistic if you think you can -- or should be able to -- control everyone else around you and make them say only the things you want to hear. That's being just as disrespectful of them as you think they're being of you.

A lot of times in these situations, the other person is just making conversation. What they say isn't important. But so many of our fellow MSers are overly sensitive, feel slighted, and turn an innocent statement into a competition -- they're right and the other person is wrong. And the more right they want to be, the "wronger" they make the other person, to the point of belittling them. If someone has to drag the other person down just to make themselves feel better, it isn't the other person who has the problem. That is being a jerk.

The vast majority of the time, when people reply to a statement by saying "I get that too," it isn't a competition and they aren't trying to hurt you. You've probably done the same thing to someone else in the past without even realizing it because you weren't sensitive to it then. We all have.

Life isn't made of what happens to us. It's made of how we respond to what happens to us.

Replying with a snarky remark and becoming hurtful yourself would be saying a lot more about you than it does about the other person, and not in a good way. They're just making conversation. What kind of perspective do you want to put it in? Do you want to escalate it? Or do you want to let it go?

It's other people's job to live their lives the way they want to. If you don't want them meddling in your life, leave them alone to live theirs.

It's your job to live your life and make it what you want it to be, no matter what happens to you. Focusing on what's wrong, arguing for your limitations, and expecting other people to agree with you is a choice you make. What that does is train yourself to be a victim. Other people aren't doing it to you.

You can also empower yourself by not opening or pursuing lines of conversation that go down unproductive paths. You can empower yourself by talking about and pursuing what's good and right about your life. And the great thing is... you get to choose.

[REG53]

No you are not being a jerk, it is very frustrating. It is just what msgijo said they are ignorant about ms. I have a family member that has research ms and she never says anything back like that.

[rdmc]

I get these too. The worst (for me) was when a neuro - ms neuro no less - told me how well I looked / was doing after over 20 years of MS dx .

IMO my dh has it correct when he says that even tho people always ask how you are doing they really don't want to know . So with that in mind, unless I AM talking to a doctor, I always answer in a flippant manner. Something like "Well I am vertical today" or in the summer "Well I haven't melted yet". That seems to satisfy their need to ask and my need to answer as well as letting the conversation move on to something else.

They cant help being ignorant about MS. And I normally don't have the time, energy or patience to explain . If they were actually concerned they would do a little research and could MAYBE understand some about what we go thru.

I still dont understand when the doctor had the gall to tell me that tho ..

I very rarely talk about my MS, and/or symptoms with anyone, the exception being my husband, one of my sisters and another close friend with chronic illness herself. But there again, I don't really tell them the whole story because who wants to hear that. I don't want to hear it either

MSWorld and other forums are the places to go when you feel the need to air feelings, rant, or discuss anything to do with your MS. Nobody can empathize with MS but those who have the disease.

My most likely answer to how are you doing is "Good." Because in truth, is I am doing good, at least in comparison to how bad I could be (all I need to do is remember those Annette Funnicello videos, and I realize good is a subjective term.)

I've also learned there are a lot of folks who like to play illness poker, that game is to be avoided at all cost.

But I wanted to speak to your neuro situation. Yep, that drives me crazy because they should be the one person who "gets" it, but they don't (and this experience has proven true with general neuros and MS specialists.)

I mentioned in a comment I made a few months ago about my latest encounter with my neuro. He mentioned how well I was walking for my stage of MS. I then reminded him that it was probably because I had had my baclofen pump kicked up about 10 mcgs lately. Then he was like, "Oh yeah, those pumps really do help keep a patient more mobile."

It wasn't that I didn't want to hear that I was doing good, it's just that the whole conversation had an air of condescension. I had discussed a new MS problem that I was having to deal with, and he tried to conciliate meby commenting on my walking. If anybody in the world should validate your MS issues and struggles, it should be the neuro.

Yeah I'm doing okay walking, but at a cost, it's not because my MS is "behaving" it's because I've chosen a somewhat "drastic" measure to control the spasticity symptom. But as a caveat, let me add that the pump is the best MS decision I've ever made, even though there have been "costs" to use this type of device (surgeries both implantation and revisions; refills; dosage adjustments; etc.)

Well if nothing else, this post proves my point, which is, come complain at MSWorld, we understand and can empathize. With the rest of the world, lower expectations because that way you won't be disappointed by their response to your MS.

[lindaincolorado]

I think I would say "gee, maybe you have ms, too" They may be trying to make you feel better
When a loved one tells me where it hurts.. I usually say I'm sorry, I wish I had a magic wand that could make it all better !

I am sending you a HUG..

[meissie47]

When I'm talking to a family member, and I'm talking about getting so tired, or my balance being really off, etc... And they say, "Oh yeah, I get that all the time!" I seriously want to scream

Just this morning, in an email to my dad, I was telling him that yesterday was a really "slow thinking" day. I was forgetting what I was saying mid-sentence, couldn't think of words, and it was getting so frustrating trying to get my point across about anything all day. And he replied-and I quote, "I have those foggy days,too. Always have had. I think it has to do with blood sugar." I want to reply, but how? "I'm pretty sure you have no bleeping idea how frustrating this is or what I'm even talking about..." But he would take it wrong, and I would look bad, and whatever... I mean, what do you say? My MIL also says stuff like,
"Oh, I know what you're talking about. I can totally relate-believe me!" Excuse me, what?!

But perhaps I'm setting myself up for that kind of response just by bringing it up. So am I being a jerk when I can't handle their response? If I don't talk about how "things are going with my day" when they ask, I really wouldn't have much to say.

Looks like today is going to be another slow thinking day. This post took me a couple hours to put together lol...

So what do you say? Because I'm sure everybody has to deal with this to some degree.

Ohhh yes!!! All the time. And I feel just like you....😠. So I try not to even discuss my symptoms /feelings with anyone anymore unless it's here or in another forum a part of.

Also the other day I had a very close relative text and ask me how I was feeling because I had been having some issues. Thinking they sincerely wanted to know I told them all of what was going on including a recent MRI and doctors visit......they never responded back to me which I'm still reeling from.😦

So yes I MOST DEFINITELY relate and don't think you're being a jerk.

[meissie47]

I very rarely talk about my MS, and/or symptoms with anyone, the exception being my husband, one of my sisters and another close friend with chronic illness herself. But there again, I don't really tell them the whole story because who wants to hear that. I don't want to hear it either

MSWorld and other forums are the places to go when you feel the need to air feelings, rant, or discuss anything to do with your MS. Nobody can empathize with MS but those who have the disease.

My most likely answer to how are you doing is "Good." Because in truth, is I am doing good, at least in comparison to how bad I could be (all I need to do is remember those Annette Funnicello videos, and I realize good is a subjective term.)

I've also learned there are a lot of folks who like to play illness poker, that game is to be avoided at all cost.

But I wanted to speak to your neuro situation. Yep, that drives me crazy because they should be the one person who "gets" it, but they don't (and this experience has proven true with general neuros and MS specialists.)

I mentioned in a comment I made a few months ago about my latest encounter with my neuro. He mentioned how well I was walking for my stage of MS. I then reminded him that it was probably because I had had my baclofen pump kicked up about 10 mcgs lately. Then he was like, "Oh yeah, those pumps really do help keep a patient more mobile."

It wasn't that I didn't want to hear that I was doing good, it's just that the whole conversation had an air of condescension. I had discussed a new MS problem that I was having to deal with, and he tried to conciliate meby commenting on my walking. If anybody in the world should validate your MS issues and struggles, it should be the neuro.

Yeah I'm doing okay walking, but at a cost, it's not because my MS is "behaving" it's because I've chosen a somewhat "drastic" measure to control the spasticity symptom. But as a caveat, let me add that the pump is the best MS decision I've ever made, even though there have been "costs" to use this type of device (surgeries both implantation and revisions; refills; dosage adjustments; etc.)

Well if nothing else, this post proves my point, which is, come complain at MSWorld, we understand and can empathize. With the rest of the world, lower expectations because that way you won't be disappointed by their response to your MS.

My neurologist does the same thing to me. Although he knows I have other issues that I'm dealing with. Your reply to this post is so on point!

[Tawanda]

#1; #2

I save my complaints for MSW. My mother, who had MS, would have been the only person who would have understood, and she died in 1972.

As for my 15 Y.O., my M.S. can't be ignored because when she asks me to do more than I can handle (which is a lot), I have to respond with something. To make matters easier and less redundant, I have designed responses #1 (I'm too tired...and yes, probably because of stupid M.S.) and #2 (We can't afford it). I have had to whip those out a lot during summer vacation.

I might feel like I am being a drag (because I am), but I don't feel like I'm being a jerk. I didn't pick M.S., it picked me!

[Tawanda]

My neurologist does the same thing to me. Although he knows I have other issues that I'm dealing with. Your reply to this post is so on point!

I am reminded of what Montel Williams wrote in one of his books (I don't remember which one)...something to the effect that even Mr. William's neurologist could not fully comprehend M.S. because he didn't have M.S.

[zilphia01]

YEEHAH

When someone asks how I am doing I typically smile and say "Yeehah" and continue on with our conversation. Most people stop asking at that point.

When someone asks why I say that, I tell them I do not want to go into how awful this is with everyone around me.

They typically drop it, then.

A few say "NO, I really want to know." I can then decide how much they really want to know about all the stupid symptoms this stinky disease is giving me that day.

Good luck.

karen

[loopey]

I Get It

I get it all the time. Even my DH. The only person who doesn't do that to me is my son. My mother would have understood because she had MS but she died in 1993. So I talk to her anyway. I am selective about complaining to my son because it hurts him. And my DH can see how I struggle without my saying anything.

The worst is my MS specialist. He does a 10 minute check and says I'm stable and he's happy. I am NOT stable. My sx have gotten worse and worse over the past years. When I first saw him I didn't need a cane, I could still drive, and could sleep at night, etc, etc. But like others have said, I don't think he means to be anything but optimistic.

So, I keep quiet. When asked I usually reply that I am about the same as usual.

[Carolinemf]

Yep you are. But hey so are they! Your both human and unfortunately we humans screw up.
Both responses are emotion/comfort based. We all (humans) have our own prob's to deal with and as a general rule someone with their prob won't GET the others point with true understanding. It's ok. I have found that if the discussion I'm having is with someone emotionally important to me that I attach importance to their understanding or lack of. This increases my disappointment because I was expecting/needing something.
All the best.

[Thinkimjob]

Ask me no questions, and I'll no lies...
You're not being a jerk; you're actually treating them well - just expecting more than most people have to give.