Need help from y'all that "get it" - My MSAA Community

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Need help from y'all that "get it"

KC0808
KC0808

Very recently I was asked how I was feeling by someone I thought I knew well. In a weak moment I answered honestly their response was "everybody has problems deal with it". I was so shocked by this response I couldn't respond. (Had a moment where I invisioned wrapping my hands around their neck and shaking them, OK and squeezing a bit) I don't look at MS as just another everyday problem. Im upset because the people you think understand say something like this and other than staying mute how do I handle moments like this?

I appreciate any advice I'm still baffled by this - "problem"

KC

38 Replies
oldestnewest

Just to be difficult why did YOU expect anything from the person? I always like a very vague answer, Shrug of the shoulders and a "some minutes are better than others, but I am doing all that I can, how are YOU doing?" People really do like to talk about themselves, and YOU can just talk to US, so how are YOU doing:-)

KC0808
KC0808
in reply to RoyceNewton

Close family member I know silly me what was I thinking :)

RoyceNewton
RoyceNewton
in reply to KC0808

Yep sometimes YOU expect better from family but I guess they are only human themselvs

bxrmom
bxrmom
in reply to KC0808

Some family can be the worst. Not sure it's cause they don't understand or care to understand. I'm sorry this family member was so rude to you. Prob best to keep responses vague with this person and move on to something else.

Jessie

KC0808
KC0808
in reply to bxrmom

Good advice :)

erash
erash
in reply to RoyceNewton

Good answer!

Good on you for trying. Sorry about the response, but love the image you created. Hope it made you feel better. I have had moments like that but now i find those same people don’t ask how I am any more. It’s good that we have this forum so we can be honest how we feel. Big hug, forget about it. The way I look at it is that it is their loss. They had a chance to be really helpful and they blew it. Just keep smiling, the image of you with your hands around the neck made me laugh 😂, so some good has come of it. Blessings Jimeka 🦋 🍫 🤗

KC0808
KC0808
in reply to jimeka

Thanks you made me feel better I really needed that.

Take Care of You

KC

It’s unfortunate but it happens because they aren’t educated enough, even our own family members.

It was important for me to sort out early on who really cared and who didn’t because I don’t want to put in energy where it’s just going to be lost, if that makes sense. I’ve not yet had anyone close to me say something rude and dismissive like that. Their response to you is very telling about who they are, and that has nothing to do with you and your symptoms are not trivial.

KC0808
KC0808
in reply to kdali

Thank you and I thank God for each and every one of you for pulling me out of a real funk :)

Take Care of You

KC

kdali
kdali
in reply to KC0808

This is a great place for de-funking! 😘

TracyBelle
TracyBelle
in reply to kdali

Really didn’t do any sorting, just got forgotten about I guess. Nobody wants to tell you how great their lives are when you have nothing but sad news in return.

Sometimes people ok all the time people don’t get it unless they live with you but sometimes that doesn’t matter either. I find that most people don’t care. I know that’s hard to swallow because they don’t see what you and I see and feel. Someone once asked my mom how she was doing and she had just had chemotherapy Treatment and had said you really don’t want to know. They looked at me and all I did was shake my head no you don’t. It’s all up to you as to what you reply.

Good luck 👍

greaterexp
greaterexpCommunityAmbassador

That must have hurt deeply. I’m sorry you had to go through that. I do think that person had no idea how to respond to your honesty. I doubt that they truly meant to hurt you, but people can be very insensitive at times, me included.

I guess I’d say that you learned clearly that this is a person who can’t handle the realities of your illness. There aren’t many who really can. That’s what makes this group so special. We really do understand.

I hope you do have someone who isn’t uncomfortable with your honesty and who can be supportive. We’re akways here for you, too.

KC0808
KC0808
in reply to greaterexp

That is why I reached out to y'all I really have noone else and sadly this is true but that's okay I'm feeling better now but yes it stung hearing words that were insensitive it just hurts. I know I try very hard not to bring pain to others. I'm so glad I had y'all to talk to and get this off my burdened mind.

Thank you and

Take Care of You

KC

erash
erash
in reply to greaterexp

Were you a counselor in a past life? Your responses are always so empathetic and therapeutic 🌈

KC0808
KC0808
in reply to erash

I actually worked for 17 counselors in three different counties I guess their words rubbed off. :)

KC

greaterexp
greaterexpCommunityAmbassador
in reply to erash

I’m just a very ordinary human being who tries hard to look at other people the way Christ did. As I stopped accepting the stereotype of God being judgmental and angry and actually looked at Jesus’ responses to people, I saw that He was always filled with such love and grace. I’m such an incredible mess-up, but He loves me anyway. That knowledge helps me look at others differently, and I hope it guides my words, especially since I can open my mouth long before I think!

How sweet you are to make such a kind and encouraging statement. That means a lot coming from you, as I admire the way you express yourself.

I stopped telling people a long time ago how I 'really' feel. My standard answer is "I woke up today, that's a positive".

What drove me to this is my former best friend who'd known I was not well for years told me when I finally got the diagnosis "that's not a big deal, there are some therapies in the pipeline". She and I both worked in a clinical trial company and multiple degrees on her part.

KC0808
KC0808
in reply to purpletustin

I guess she didn't have a degree in Empathy.

I'm learning slowly on how not to answer in any detail but I literally have to muzzle my mouth for self preservation.

Take Care of You

KC

Sandydemop
Sandydemop
in reply to KC0808

Dear KC,

You know what gets to me? Ok, I'll tell you. :) When my husband asks how I am and I tell him, he says "me too." Tired, fatigued, weak what have you. where is my empathy? Where is HIS empathy? Thanks for letting me vent. Any suggestions are welcome. It really needs to change. Thanks very much

KC0808
KC0808
in reply to Sandydemop

I have empathy for all and as I get older I realize so many people who have not an ounce of empathy. What is happening to natural honest to goodness caring for others?

I don't know how to not care and I'm OK with that even when others are acting like complete asshole*.

I just say “well I feel OK right now, but yesterday was hell!”

WOW! How rude! I'm not a nice person... The next time they would say some problem back I'd be, "well, deal with it" back! Watch for their shocked face, then explain that this was how you felt when they were that rude...

I plan to do exactly that paybacks can be a real bitch :)

KC0808,

Unfortunately there are people who are not educated.

Even if this person was knowledgeable about MS that was

a lame disgusting comment.

When I'm upset about what someone says I take a few deep

breaths. Depending on the situation maybe even say

excuse me and walk away.

Leslie

KC0808
KC0808
in reply to lbenmaor

I was so shocked I stayed mute. I was totally floored by this unexpected comment. I don't know how to let hurtful comments bounce off me but I guess I will learn gotta do what ya gotta do.

Take Care of You

KC

Sorry you were hurt. You are now going through the "school of hard knocks." You will learn what you can and can't say about yourself to others. You will learn that turning the other cheek is usually the best move at the moment it hurts. You can then later tell that person that their words hurt your feelings. It will help both of you if you do. If they still want to be mean then you can choose to stay away from them or not talk to them. That's one thing about life, we have choices on how we deal with it. We can make our life good, even when it seems like the walls are falling in. It's just perspective.

I, for one, am grateful that I was diagnosed with MS. It gave me a reason why I felt like I was losing my mind and my body. It helped me get closer to God. It taught me to be a "receiver" rather than just a "giver." I know that sounds strange but other people have to be able to "give," so, since every "giver" needs a "receiver" I also had to be a "receiver." I've learned to get out of "myself" and be more aware of what is around me. I stop and admire the trees, mountains, smell the roses, etc. I can no longer work, yet my life is very full and rewarding now, even with MS.

Hang in there and don't give up. There's a lot of us here on this forum that will listen to what ever you have to say, and will listen without judgement. Take care of yourself, no one else can take care of you the way you do.

Very, totally awesome reply there hairbrain, wow! Couldn't have said it better myself!💜💛❤😻😍Blessings---Jazzyinco

KC0808
KC0808
in reply to Jazzyinco

I agree. Always learning the good the bad and the ugly :)

I’m so sorry that happened to you. Sometimes I just want to tell somebody exactly how I feel too. You may have just needed a little extra caring that day or a big hug. Instead it must have felt like a slap in the face. People often don’t know what to say, so they say something stupid or hurtful. Unless this was a mean person,

maybe it was just a thoughtless remark.

If you value the relationship you could talk it out. Try to explain all the everyday challenges with MS. The unknowns, and unpredictably we wake up with everyday.

Whatever you do try not to hold on to the hurt/anger. That will not be good for your health. Wishing you peace. Linda

KC0808
KC0808
in reply to Linda3579

Thank you Linda.

Take Care of You :)

KC

I simply had to accept the fact that “normies” are ignorant. They know not! #dummies 🙄😂

KC0808
KC0808
in reply to Kj9681

I agree with you completely :)

Anytime I mention my cognitive decline, someone says yeah but I do that too, or it’s just aging. WRONG I say, I have all the normal decline of a normal 50 year old PLUS 20 years of brain damage. It is not the same thing at all! My 83 year old dad even says yeah that happens to me too. Yes it does but did it happen when you were 50, or when you were 83. Where will I be at 83 if I am already experiencing this now? I don’t want to live that long to find out. Someone said well you can get Medicare at 65 and then you won’t have to forgo the treatment you need but can’t afford. In 15 years I hope that I am not here because the past 15 have been unbearable. Things could always get better people say, but I have already been waiting 20 years. If this is God’s plan for my life nothing can be done to change it. . .

KC0808
KC0808
in reply to TracyBelle

Tracy I totally understand and I feel exactly the same way. I could try to be more encouraging and say things like - life is so worth living or find something that you want to live for or think of all the people that have it worse than you..yada yada yada. I've heard this and I know how I feel and I own that! noone can tell me how to feel or what to feel. We are the only ones who know how/what we're feeling and pretty much all the time it's not good. Now on a much lighter note I truly hope tomorrow you have a better day and I will try for the same :)

Take Care of You

KC

I'm sorry KC to hear about what they said to you. It's true that you have to choose who and want you want them to know. They don't understand what it's really like. I know it hurt your feelings. Sometimes it's better just to turn a cheek, then you not getting yourself upset. I hope your feeling better now! Take care, Ladybriars

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