When you feel like others just don't get what you're going through, remember that friends and family don't need to directly experience your symptoms for them to feel empathy for you. We're all connected by our struggles, even if they are not the same. We all experience pain, illness, and sadness at some point in our lives. These are universal experienced that are part of being human. Sometimes the best way to get what you need from others is to give it. the only thing I can really think of is for you to educate them on the disease and let the rest go. In time, they will come around. It is difficult because MS is an invisible disease, meaning you don't walk around with a big band-aid on your forehead with MS printed on it. Your family will just have to watch and see you experience this disease, and the rest can go to hell. Obtain some brochures from the MS Society about telling family and helping them with their reactions. In addition to our own conflicted feelings about being ill, those around us may also have a hard time believing the diagnosis, and their disbelief can add to our difficulty in adjusting. Often the invisible-nature of MS makes the disease extremely difficult for everyone to accept. Initially, it is important to be patient and gentle with yourself and your loved ones as you adjust to this new reality.

I want you to know that I can feel your pain and have gone through some similar experiences. I was diagnosed last year with RRMS and I remember my mother saying " sorry I just don't believe it". She later had to leave work early one day due to being so upset over my diagnosis.

I get really tired and fatigued often, to the point where I don't have the energy to sit up much less get dressed or take care of myself or the house or my family. My husband once said to me that what was happening was "a cop out" because I didn't feel like doing anything. I think now a year later he feels like a real a**hole for saying such a nasty and untrue statement, especially after seeing 5 new lesions on my MRI, two of them on my spinal cord.

Lots of people that I used to work with could not understand why I would call into work so often. They would make whispered comments that I looked "just fine". I would get funny looks and smirks.

I realize now that the only people who can really understand are those going through it themselves. No one but another person with MS can know the fear, fatigue, pain etc. that you may feel. You can't force others to understand or even accept what they are not ready for. For now you need to find support in other places until your family may be willing to provide it.

I hope everything works out for you, please know that I am always here to chat if you need an ear.

MyMiniMonk....
It is difficult for sure for people on the "outside" to look at some of us and see what is going on. If Im not mistaken you live with your family you speak of??? or see them regularly??? They should see the daily changes but have no clue what is real and what isnt because they arent walking in your shoes (pun intended).

I have been dealing with this and searching a dx for over 16 yrs now. When I was finally diagnosed no one was really suprised except hubby made a comment of "this doesnt seem right, this neuro dx'd you so quickly maybe it is wrong". When I explained he just knew what to look for and that my body finally cooperated with the tests...he felt better about a quick dx. (I had only seen this neuro for less than 2 1/2 months and poof a dx).

if your family wont listen to you.. try this .... let them watch this video.
It is called "the faces of MS" it is on youtube if you cant pull up the video from here. It shows that not all MS'ers are in wheelchairs, and are looking more and more like everyone else. It is a real good video... sit them in front of the computer and push play...dont even tell them what they are watching. Do one member at a time. They will soon understand, and if not.... then you brush their insensitivity off your back, and come here often for people that do understand.

http://www.youtube.com/watch?v=AZyd4FJinx4
Copy and paste this in your browser. or look up on youtube "The faces of MS"

Hugs
Janel

Sounds like your family is in denial about the fact that you could have something like MS. Probably the best thing is to explain to them that you didn't want this either. I agree with LChoppel and it's what I have done in educating everyone as I go. Hopefully this will help bring your famikly around. I haven't checked out that video listed above but that might be helpful too.

My hubby was dx the very beginning of Jan 2005 about 6.5 years ago. When his parents asked what the neuro had said to him at dx I told them. I ended slowly with ..the neuro also said he had a 40% chance of being in a wheelchair by the time he was 50yrs old. His mom whipped around and said YOU are being negative about his disease. You know being negative is like feeding his disease.
BTW mother-in-law thanks for shooting the messenger who happens to be in her 3rd trimester with your grandkid and doesn't need anymore stress.

His parents were in total denial. Yes they knew he had it and believed it. However they had "seen" someone in their town with MS walking down the street with a cane. Their conclusion - the ONLY symptom he had was his walking from "seeing him on the street." They forget his paternal aunt was immobile in a bed being fed and clothed at 70yrs because of MS.

It was this summer (2011) when his walking got really bad they thought his MS had STARTED. His mom came up to me & said "He is really bad isn't he?" "He has to go to the doctor so they can FIX IT." I just kinda looked at the ground and said really slowly and quietly.. " it (MS) is degenerative." Then she went up to him and told him he needed to see a doctor so "they can TAKE CARE of IT." Give me a break it has been 6.5 years and still in denial. Finally about 2 weeks ago my mother-in-law said "so what can they do to help?" I just got this weird look and stared at her. Then she said quietly "They can't do anything.." I said not more than what we are already doing. She is starting to get an inkling.

My family is made of a lot of RNs so they REALLY get it. My mom said sadly to me last weekend "It is a really awful disease. It is like watching a train coming and then watching the crash in slow motion." My mom the positive person as ever (sarcasm). My side is very helpful. My mom came to me and said my dad/brother could come build a small ramp if we want them too. They are very understanding.

I guess in my rambling you see different people take this disease differently. As for your UNeducated family I would find a complicated trig math problem on line and print it off. Then go to the bookstore and pick up the idiots guide to MS. Put the book and your rolled up MRI in a bag. Go up to your mom and aunt, then lay down the copy of the trig prob keeping the book in a bag out of sight.

Then say something like " How do you explain this problem?" They will probably look at you strangely. Then say" Since you know nothing about trig it would be hard for you to make a comment let alone a judgement." "Well that is how I feel about your criticizing judgements about my MS when you don't know a damn thing about it." Lay down a copy of your MRI "These are my lesions." Lay down the book "Until you read this book from cover to cover I don't want to hear another word about my disease come out of your mouths." "If you LOVED me you would have more compassion. I LOVE you and I do not say when you got sick with X (insert heart attack, stroke, etc here) I didn't say you made it up. You need to treat me with the same compassion you are supposed to be learning in church/ synagogue / mosque." Then walk away. Or do something else which is your choice, I am just throwing out another option.

Good luck in finding some friends that DO understand you..maybe a local support group,
EP

A2 (EPagain) what a fantastic comeback, spot on. I couldn't have said it better myself.

Alexana (A1) Great minds think alike ( :
PS Hope all is well in your neck of the woods

I understand how frustrating it can be getting people espeacially your family to understand. When I was diagnosed I got really bad and almost died. My trouble was the little stuff. People just don't get it. I dealt with that all my life trying to explain stuff to everyone. I even had an emergency room doctor who told me I was faking it and stuck in a room so he could arrest me for drugs. It's a hard disease that way. I hope you feel better and I hope your family starts understanding. It will just take time.

booger wads! how can they say a flippin' word if they won't read the stuff. They are SO insensitive, that i would like to slap them. and i am a fairly rational person. let me say it for you, cause it felt good.
But you cannot argue with ignorance, and that is what they are if they will not read. Tell them youu would worry about their reaction but you have to devote your strength to staying as well as can be. tell them that they could help you in this battle and not be another enemy that you have deal with. they do NOT want you to be sick, but denial wil NOT make it go away. people are used to seeing only the wheelchair bound, tell them that they did not instantly get to that stage and some never do, but is still a struggle. let them read some posts from this. take care of yourself and set up a support system that does not include these people, i know that sucks, but we will be sending you support...feel it? take care-leslie joan in the boonies of idaho.

Hi MMM. Guess I'm lucky , in that I was diagnosed with MS in 1995 but it has progressed slowly through the stages slow enough, that family and friends have had enough time to deal with it. I had some family and friends that instantly caught every disease or sickness that came down the road. I kept a sense of humor. Very important to me, but not the biting type. When people would say "Where is your wheel-chair?" or "Why aren't you bedridden?". These were common questions until a year ago when I got to the point of needing a wheel-chair. I went to the Dentist for teeth cleaning, and before I left there,I went to use restroom and totally collapsed on the floor in there. Lifesquad came and later that evening I was admitted to hospital for 4 weeks. Out of this, my family, as well as the people at the dentist found out some things that could happen to us folks with MS. And my answer to the questions about wheel-chair or bedridden until recently has been "I haven't gotten that far, yet". But now I have to use the wheel-chair, so that has brought about some questions. Mostly about Handicap Assessible places or things like that. And believe me, I have filled out many of those question cards at restaurants. And I also answer to the occasional questions about the MS, "It's taken me 60 years to get this far". Keep a sense of humor, and after a while, hopefully those people will listen. Little bit of humor can go a long way. GOOD LUCK MMM

I know exactly how you feel!!! As I have posted before & in my journal!? My son did not handle any of this well at all! And, I have not handled his repeated cruelity & accusations, & demand & abuse well at all either!?

My son beat me up repeatedly & put me in the ER several times! Lived off of me, & instead of helping out he did the above & did not help out at all! He instead did the opposite; with living off of me, using me, abusing me & then leaving me with with the results of his abuse, with all the bills that he ran up & left me with, & with repeated mean, vicious, cold hearted, cruel remarks........ Not to mention accusations!

He has it in his rediculous naive stubborn, cold hearted, immature head that: LIKE YOU.... I am not really sick! I don't really have BI problems! Or PCS problems! OR MS problems!? Or P. Arthur problems!!! He can't even bring himself to believe how hard & difficult & how many problems the BI shit alone causes me!!! Much less believe that I have all these other problems too!!!!

And, I kind of understand the denial!!! But what I don't understand with my family member here is why???? Why does he have to beat me up??? He was beating me up physically as well as mentally!!! And, since he left! It's just mentally!!!!

He tells me that a job would fix ALL of my problems!!! Even though I was working a great job, & had a great appartment & had a car that I had paid for in cash when I got my TBI & other bodily injuries!

And..... I have worked multiple jobs off & on since! I told him that! And, he knows that!!! And, I told him that if a job would fix all of this & make it all go away then it would have already made it go away & I wouldn't still have all of this!!!

He basically says that I have it because I want it & because I don't try hard enough to get rid of it! He told me that if I just out & exercised & walked every day & got a good job & worked everyday that I would be fine!!! Says getting a job fixed him & did wonders for him! I say if a job fixed him & made him so fine, then why the hell does he beat me up all the time!!!??? He can't see me or talk to me without beating me down mentally!!!

Then, he also said that the only reason I ever want to talk to him or be around him is because I just want his money & just want him to do everything for me & that he don't won't nothing to do with me because of that!!! Says I just have all of this, or pretend to have it one so I can manipulate him into giving me money or doing shit for me! Says I just got all this stuff, or I'm making it up one to get money out of him & to manipulate him! Says I don't love him & I never did!!! And, that he don't want to be caught up in all this drama no more!! Says all this shit is too much for him! Too much drama for him! And, that he don't want to be sucked in to it no more!!!

But, like I told him!? I had the TBI & all that stuff years before he ever came along!!! And, why would I plan that horrible wreck in Oct of 85, just based on the chance that I would have one child in July of 89!? That's the stupidest, most rediculous thing I've ever freaking heard!!!! I told him I'd have to be pretty damned diabolical to think of all that & pull all of that off!? And, to even think it or do it in the first place!!!

I told him that I was there for him for 20 yrs! I told him every single day that I loved him very very much & I hugged him!!! I did this many many times throughout the day!!!! I ask God just for him!!!! And, God gave him to me!!! And, like I told him!? I was a single parent & it was really really hard on me!!! And, I could have easily just called SS or CS & have told them that I couldn't handle it & that I needed to place him!!! OR I could have just called them or anybody or just simply left his stupid butt somewhere if I didn't want him!!! That's just stupid!!!

I told him--LOOK! NOBODY HAD A GUN TO MY HEAD!!! NOBODY FORCED ME TO KEEP YOU OR TO BE YOUR MOM!!! AND, I WAS ALWAYS THERE!!!! I DIDN'T DATE! I DIDN'T SMOKE! I DIDN'T DRINK! I DIDN'T DO DRUGS! I DIDN'T PARTY! I DIDN'T GO OUT UNLESS HE WAS WITH ME & IT WAS SOMEWHERE THAT WE COULD GO TOGETHER!!! WE WERE ALWAYS TOGETHER!!!! AND, YOU DON'T DO ALL THAT UNLESS YOU REALLY LOVE YOUR KID! OR THAT PERSON!!!

And, I told him that this ideal that I would conjure up a TBI & the problems from that--that happen years before he was even born was rediculous!!!! And, that it was also insane & rediculous to think that I OR ANYBODY ELSE FOR THAT MATTER would conjure up the MS, or P arthur!!!! Or being deathly sick all the time with real bad resp...... infections!!! You can't fake a resp.... infection!!!

You sound funny! You run a fever! You hack your brains out!!! All kind of miserable stuff! Just like I'm doing right now!!!

Like you said!? Why the hell would anybody make that up!? And, I've tried to get him to visit websites with tons of info on them!!! He is on the computer all the time!!! That's what he specializes in! And, while he's on the info.... hwy.... he could just as easily read up on all of that--TBI, PCS, MS, P.ARTHUR, ETC... & HOW THAT EFFECTS YOUR BODY! YOUR MOOD! YOUR ABILITY TO FUNCTION! ETC.....

But he just stays angry at me & directs all of his anger & resentment & hatred towards me!!! And, all that does is just make both us miserable!!! He's obviously miserable!!! And, has problems or he wouldn't be so damned angry & hateful!!! And, all of this shit with him has really really hurt me!!!!! More than anything in my whole life!!!! It has & does rip my heart out!!! I just find myself crying about shit a lot of the time!!! And, the stress & hurt of it all has dramatically hurt my health!!! It has really went down hill fast since he beat me up--physically & mentally so much & then left!

He won't call! Or come over! He never ever checks on me to see if I'm okay or even still alive or not! I go through all of this stuff day in & day out all by myself! And, he was sooo mean the last time that I saw him on the hwy recently.....And, he was just soooo cold!!! So distant!!! So mean!!! He made it clear that he wants nothing to do with me or my life & that he's sick off all the shit & all the drama & doesn't want to pulled back into it!

I know that I don't have a choice!!! I know that I can't make him do nothing or accept nothing or come around to different thinking!? But I miss having him in my life!!! SO VERY VERY BADLY!!!!! AND, IT HURTS SOOO DAMNED BAD!!!! AND, I JUST THINK OF ALL THIS SHIT & JUST THINK OF HIM AND, I JUST CAN'T STAND IT!!!!!!!!!! IT JUST HURTS SOOO BAD!!!!!!! AND, I JUST THINK OF IT & CRY MY EYES OUT!!!!

HELL! I'M CRYING MY EYES OUT RIGHT NOW............SO I UNDERSTAND TOTALLY HOW YOU FEEL!!! AND, HOW MUCH IT HURTS!!!! AND, I AM SOOO VERY SORRY THAT ANYBODY OUT THERE HAS TO EXPERIENCE ANY OF THAT!!!! I WISH I COULD HELP............

Paint Warrior...

Words can NOT express how I feel for you. You obviously love your son and put a lot of work and caring into raising him. However, any relationship is a two way street and you can't make the other side respect you. You need to get out of the relationship. If you have caller id and he calls do NOT answer. Place a restraining order against him with the cops and if he comes near you call the cops. If he gets pissed just say I love you but your physical and emotional abuse shows you do not love me. The restraining order is for my protection ...against you. If you do not leave I WILL press charges.

I am sorry you are sick and there is nothing you can do about that but you DO HAVE CONTROL over not allowing him to beat you up in the future. Please find a counselor or local support you deserve someone that cares. I know I do.

All my best to you,
EP