people just don't understand...

[catfreak]

We have to accept that others are just not prepared to deal with our disease. I think most of us have been go-getters in our past life before MS and now we are now "go get it for me because I can't".

We are not lazy, quitters or doing bad to ourselves. We have FREAKIN' MS.

My rant.

CF

[reneelucia]

I think this is easier with older friends but I am now giving people the talk in advance. I tell them I'm not into planning things right now, I'm in the moment. I explain that there are good days and bad days with this disease. People who care will let you call them, for lunch, for example on a good day. I am also lucky enough to have a husband to vouch for me. Get a partner who will advocate for you, if possible.
If all fails.....ditch them. They are too young and inexperienced to get it.

[cris4]

Hi, I'm new here, but not new to ms (15years now)
The friend and family debacle. It's horrendously disappoitiing. I remember the people that I thought I was so close to, the people that were so important to me, I remember all the caring, looking after physically or emotionally I did for them. Then 3 years ago there was a sharp progression, and I haven't improved yet. Nowadays, I can't walk without a cane, I need to use catheters, I take an awesome number of tablets and deal with pain constantly. Where are the people I was so close to? Gone. I was devasted then. But now I get it. I thought about it and in the history of the friends and family there weren't many examples I could think of when they were there for me. At the time, I remember thinking how lucky I was that I didn't need help, but if I did these good family and friends would be there. Hmmm... when the tables were turned they weren't. My expectation that they would be, was my mistake. Ihad put them on the level of giving, sympathetic, empathetic people. But they weren't, they were the takers. That's why in the past we went well together, they were the takers, I was the giver, great match. Then MS raised the stakes, and I couldn't be a giver any more. I never had the chance to try the taking as they were gone! But I am now on the journey to find new friends. The type of friends who see me as I am, not who they wish I would return to being. And whilst every now and then I may get a pang of disappointment I remind myself, what I did in the past I did to help people, never did I think of it as a score card, so I try to tell myself not to be hurt, but to move on and find new people. (I haven't found many/any yet, but I'm not hurting so much now, and I am looking forward to the future). Good luck to you, I hope you find a way out of the quagmire.
cheers
cris

[MrsGeorge]

I am lucky that my closest family - husband and mum are massively supportive and understanding. Others seem to get frustrated. I have one friend who gets cross when I can't follow a conversation but he's the one who insisted on a late dinner!

I am more worried about admitting to the exhaustion at work but I guess time will help.

[mrhodes40]

Ihad put them on the level of giving, sympathetic, empathetic people. But they weren't, they were the takers. That's why in the past we went well together, they were the takers, I was the giver, great match. Then MS raised the stakes, and I couldn't be a giver any more. I never had the chance to try the taking as they were gone

This is sad. There are a lot of takers out there unfortunately. and oddly they kind of believe that being a person with MS you are going to understand their whatever it is they have going on in their life--the ones I know often create drama without there being any real serious issues there to begin with

Once I tried to tell a drama queen in my world who I had supported through crisis afer crisis with my time, energy, and money that what she was talking about is no big deal; on the grand scheme of things it was insignificant, she could have something permanent or disabling. She thought about it for a day then called me back to let me have a piece of her mind. It was horrible, she said, for me to wish MS on someone else.

I had not done that at all, the charge was absurd, but in her drama queen mind it was another drama--I was wishing MS on her! Suddenly she did not have to look at her behavior and wonder if it was possible she was making mountains out of molehills, no she was the victim! and in her story I was a creep who wished other people would get MS!

I have never revealed to her the precise reason for the lack of friendship and never will, though she occassionally still attempts to connect... no doubt I was a great resource she misses; endless free baby sitting, trips to the store to get cough medcine if a kid was sick etc. The absurdity of a disabled woman going to the store for cough medicine because a healthy woman is too "overwhelmed" to do it took me a long time to see.

She revealed her true character and I finally saw it for what it was rather than what I thought it was: She was incapable of compassion, and I do not need toxic drains like that in my life.

I can't afford them.[/quote]

[brendaanne]

i have been labeled lazy.. been talked down to. had fights over my health. no one else seems to care about how i feel like crap most of the time. and i am not depressed... tired yes. i have been under investigation for having ms for 2 yrs. my doct finally agrees and im going to neurologist for diagnosis. symptoms have come never leaving me. fatigue is always in the forefront.plus the stress of always living in a shift work home and managing the home etc. i have worked, and am employed with no hours at the moment. never get a hand aroudn the house and thats fine. but its always the expected im going to have to get out there and work. I do work as much as i can handle. and then i get oevrwhelmed because i come home and have to do all of it too. from the beginning i was never goign to do it all.
because i know when my body gets over sterssed i end up with mroe pain and symptoms and back at the doctor he says to limit my stress in the home etc til we find otu whats going on. ie m.s.

im so mostly sick of peoples lack of regard. autoimmune things run in oru family. im not making anything up. im not lazy wish i felt ebtter. lvoe my life. love my psouse. but.. hsi lack of believing me if you will or support at this point im thinking of taking care of number one if i get the diagnosis. hwo dare family ad friends take soemone for granted who is ill. i dont care if they dnt know what is wrong til one day they do. it ruins peoples love trust respect.

im so mad now its almost going to be a relief so i dont have to be made to feel like a less than person who would love to contribute and have a more filled life. i feel like i wear concrete shows alot of the time nobody gets it, nobody helps with nothing. and they dont hear my NON complaints about my m.s.like symptoms. they go ya ya. almost as if to say go to work. im tired.........


it has changes my life. even without the dam diagnosis. i know who ahs my back for sure. nto my spouse. its all abotu money. now the odd tiem eh asks me if i took my b vitamins did i eat so maybe he sees its a possibility. my dad has aggressive parkinsons and is only 56. my gramma has 4 rare autoimmune things going on.. i ve had 2 uncles that died from m.s. one from raynauds. my great gramma form parksinons( she didnt even know her name when she passed)

so even the aggressive forms seems to eb prevalent in ym fmaily..

so tired of the fight every which way. nwo if i get a diagnosis what to do abotu my job. i am support worker for the elderly and disabled. if i tell them they may let me go. i lvoe the work i do and the opportunity to do it. thks for listening

[jimmylegs]

sad tales on this thread. too bad there are so many selfish people out there in the world. brendaanne, you said you were on some b vitamins, anything else?

[cheerleader]

These are some really sad tales. Speaking as a healthy person, it's hard for us to understand how terrible the fatigue, pain and daily symptoms of MS can be. You look just fine! people say to my husband. They don't understand that all he wants is to lie down and take a nap. He fell asleep driving to a meeting once, and had a fender bender. We're thankful it wasn't worse!

I've had to explain MS to friends and family, and have printed out informational sheets to help them understand that even though our Jeff looks just fine, he is dealing with a very difficult illness. And it won't just go away if he takes a quick nap and "gets over it." He is not lazy or mentally ill...his central nervous system is changed. No one can see it, but that doesn't mean it isn't real. Here's a link with simple, easy to understand facts about MS...maybe print some out and hand to folks who don't get it....

link

Hoping everyone finds at least one person who really "gets it."
AC

[reneelucia]

I really related to the venting person. The fatigue is bad enough but then the fight for the right meds, the right diagnosis, the insurance company crap...all the perks that come with managing ms. But the worst thing is the attitude of people. just a little kindness and support can go a long way. What is so hard about that?

[Wonderfulworld]

Wish I hadn't checked back on this thread - having a bad week and it's only made me feed sadder - But it speaks the truth. It is one of the most horrible aspects of MS that people just let you down and drop out of your life when you need them the most.

Told my Mum - who is a fabulous caring person, but sees me as doing ok and not in real need of help - that I was exhausted this week and she said "yes, me and your brother are so tired too this week, I wonder is it something in the air".

[Terry]

Told my Mum - who is a fabulous caring person, but sees me as doing ok and not in real need of help - that I was exhausted this week and she said "yes, me and your brother are so tired too this week, I wonder is it something in the air".

I bet we've all heard some form of that one!

I have slowed on telling people about my MS. I've had it three years, and get the feeling folks don't "see" anything wrong and therefore don't want to "hear" anything about it anymore. I think people get MS-friend fatigue. I can't say I blame them, really.
So on the days I trip 10 times b/c my leg won't lift, I just try harder to lift it higher, concentrate as I walk, and go on.
Can't pee? Who wants to know that! Peed 6 times before finally falling asleep? TMI!
Maybe I underestimate others and am just tired of thinking and talking about this stuff myself! It seems so redundant to me, I can't imagine being someone else listening to it.
I do know that people don't understand. They don't understand that even when you look fine, and you have no big, obvious symptoms, the MS is with you constantly. How much do I spend during the day not feeling MS'y? Not much. Yet how do you explain it so that people get it? I don't think you can. Even that list you posted, Cheer, is awfully short. It encompasses SOME symptoms, but it does not BEGIN to describe the CONSTANT things that an MS'er feels. Heavy. Tired. Nauseas. Vibratory. Itchy. Vision issues. Clumsy. Can't think. Can't pee. Pee too much. Can't poop. Legs burn. Legs shake. Arm hurts. Throat lump. The list goes on and on. How many times a day these various things come and go? Many many many for me. Different things on different days, or weeks, or months, but ENDLESS! So so redundant.
It is no wonder that others don't want to hear it. I am sick of it myself.

[Wonderfulworld]

and am just tired of thinking and talking about this stuff myself! It seems so redundant to me, I can't imagine being someone else listening to it.

You're so right Terry. I agree with you 100% - I get sick of MS and giving it any space at all. It's already taken so much from me that I begrudge it every little damn bit. In the first years after diagnosis I shared too much with people. Now I only tell them when I'm really heading for a relapse so they understand why I've to cancel or let them down. I think that's helped my friendships to an extent but my poor hubby listens to a lot of moaning from me. I said to him once that if I die before him, no-one will ever be able to say "she never said how much suffering she was in" like you hear said about people at funerals - and he couldn't help laughing at how true that was

[mrhodes40]

It is no wonder that others don't want to hear it. I am sick of it myself

yep-eronis on that one you put it quite succinctly[/quote]

[Mike56]

Cris4, you mention takers and givers. Since my problems started in Feb '09, I've come to realize that I am a taker. I'm OK with it though, because my wife is and has always been a giver. I am so glad it's me having these issues rather than her, because I would hate to see her with my symptoms, and because I know I could not look after her the way she looks after me! It's a great comfort to have a partner who can understand, help, and love me through the bad times as well as the good times!
So far I haven't had too many problems with friends and relatives reactions. Maybe because I'm 53. I bet if I was in my 30's and not feeling up to doing things it'd be different. Who knows?

[RedSonja]

Try giving them this:

http://ms-people.com/forum/index.php?showtopic=4238

and this

http://ms-people.com/forum/index.php?showtopic=70

Found on UK website MS-People and so true it brings tears to your eyes