This Is MS Multiple Sclerosis Community: Knowledge & Support

I think it all depends on the state of the person with ms, i think alot of the time it's this person that sabotages the relationship because he or she just cant't see it going forward. It's all relative to disability and state of mind.

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Had ms for over 19 years now.

That sounds like a really well adjusted outlook, seriously. I honestly can't imagine a better view.
Bob

I wondered how long it was going to take before you joined this thread and took a snipe or two at me....some things are so predictable

"Six" appropriately said it when he stated that he wasn't going to let any statistic rule his life. And that's how it should be....at least he recognizes how to handle this kind of information. I only mentioned this number to illustrate just how difficult relationships can be when one partner has MS.
Unfortunately some readers took great exception to this and reacted the way they did. There is nothing I can do about that and I certainly didn't invent that statistic. You can call it "ropey" or "insensitive" or whatever but the fact remains it exists. Equating this to Biogen numbers??!!!.....geez Ian, I'm not sure just how you came up with that comparison but at least Biogen makes money from their numbers

As well, it is not surprising that there are several participants in this forum that are part of a successful MS relationship. The people here are able to obtain all kinds of information on many things that affect someone who has MS and use this to their benefit. It's called educating one's self and education always has its benefits. Unfortunately, most MS patients don't have access to this kind of information for various reasons and they miss out on what is available here and on other MS forums.

Harry

Harry - where did this stat come from?

Ian,



Sometimes I find your comments utterly preposterous and here is another example!! Stating that I have stopped posting on the Tysabri forum because some people are posting good experiences is absolutely garbage and could never be farther from the truth.

And I for one second am not telling anyone that 90% of them with an MS relationship are going to break up. That number came from experts who deal with MS relationships and was posted to show the huge difficulties we have in living with this disease.

Give it a rest, Ian....stop trying to tell others what I may or may not mean when I state something. If you aren't sure, please ask for a clarification and let me tell you what I meant.

Harry

Thanks for voicing your opinion and stating that my intention was simply to present some information.....because that's EXACTLY what I was attempting to do. SixSix seems to understand this and I'm sure he must be scratching his head after reading some of the "attack" posts.

I am very aware that there are going to be some people who don't agree with what I say. But what amazes me is these same people find it necessary to resort to name calling and personal attacks.

I'm glad you can see through this and take it for what it is....information.

Harry

I originally saw it a number of years ago on one of the MS forums and it was part of a thread involving discussion on marriage relationships. The person who quoted the number, if I can remember correctly, got it from a publication supplied by the NMSS but please don't take that as gospel. I was really quite surprised that the number was so high at the time and voiced that comment in the thread but the poster assured me it was legitimate.

Also, about 5 years ago my wife and I were seeing a psychologist after she broke her leg and was having a very hard time with her MS at that time. I mentioned this statistic to the psychologist and asked her if it was relatively accurate and she told me it was pretty close from her experience and knowledge.

But please remember, this stat is a number and reference of information, only to indicate how severely MS can affect relationships.

Harry

Although I've been more of an observer, I am trying to take more of an active stance on comments that are important to me. Harry...I know I don't know you personally. From what I gather, your wife has MS (if i'm wrong, please correct me). If that is the case, I'm both sorry that you've had to deal with this terrible disease and I really respect the fact that you've stood with her. That being said, just as I am unable to fully appreciate how it would feel to have a partner with MS (like you), even the most compassionate loved one can never fully grasp what it is like to have MS. Each situation is hard, yet different. I can't speak for everyone with MS, but there is a time and place where I want to hear those kind of stats...for a number of reasons. First, while I look for information from this site, I also look for support. Sometimes these coincide, but when they don't, I usually prefer support. Much of the information can be found when you "google" something. Second, hope can be such an elusive thing when one is facing a chronic and incurable disease, that disseminating certain stats can make it harder to maintain that hope. For some of us with MS, we have what is sometimes termed a "healthy dose of denial"...i know that is a bunch of psychobabble, but it is actually helpful for us at times to believe things will not get worse or even get better, to maintain that hope. Third, statistics can be misleading. I didn't catch if someone mention the source of the stats, but we repeatedly run into contradictions in research. For example, the recent reports of benign MS aren't consistent with a similar study done at Mayo several years ago. Which is right? Who knows...we need replication.

Harry...again, not knowing you, I am hesitant to criticize...it seems like you are a real caring person...but, please bear in mind that even though you and others who are also touched by MS have a much better appreciation of what it is like dealing with this disease then the average person and having a loved with MS poses its own unique challenges, it is still different then actually having it. For some of us, "Hope" is our drug of choice and we turn to resources like this site to get our fix. Please consider that.

my two cents,

Thinkingoutloud

sixsix,

My girlfriend of 6 years dumped me about 6 months ago (look! six,six). It really sucked. I have no words of wisdom for you because it hurt, but it's getting better all the time. I'm pretty sure 6 months from now, you'll be saying roughly the same thing.

Everybody else,

I have no problem with anybody saying anything they want on this website -- I'm in favour of zero censorship. But if you want to comment on HarryZ's statistic, please, I'm begging you, start a separate thread and talk about it there without taking away from sixsix. I feel bad enough for sixsix already without him also getting thread-jacked. (new word, copyright Dignan 2007).

sorry about that dignan...still finding my way around this site...

Thanks for getting us back on topic dignan.

By the way dignan, Prosecution reserves the right to cross examine at a later time.

SixSix, of course you have the right to plead the fifth but if you choose to answer I'm wondering:
1. How old you and your ex girlfriend are?
2. Was she aware that you had MS when your relationship started?
3. How long was your relationship?

In one of your posts you mentioned "I kept getting worse and then I could see it her face that she was waiting for any imperfection to jump on." but I'm wondering if you deep down honestly feel that your breakup was entirely due to your MS?

It seems like all of us have given our opinions of what we think of your girlfriend....but what is your personal impression of her and her behavior?

Bob

Thinking,

First of all I have to say that I enjoyed reading your very well thought out and written message. You made several good points, especially the one about a spouse or friend who doesn't have the disease being unable to fully understand what it is really like to live with MS. How very true. Although people like myself are very close to the disease, we can't really "feel" what it is like to suffer with it.

When I mentioned this stat to SixSix, my intention was to show the difficulty in living within a MS relationship. He was obviously "crushed" to see his friend abandon him so quickly and I was trying to point out that so many other people in this situation have experienced this kind of pain. In other words, he wasn't alone and hopefully after time, he would recover and move on with his life. Other readers said similar but used different words.

Unfortunately some people took that stat and thought I was trying to be negative and destroy the hope for people in MS relationships. Nothing could be farther from the truth. I can only state my intent....if others don't believe me there is nothing I can do about it other than what I am writing here to you. I have seen what this disease has done to many after following it for 40 years....and the last thing that I would EVER do is try and destroy a person's hope!

Harry

Thanks for the response and kind words Harry...for me, it was never a question about your intent...it is obvious you care...i just wanted to point out why reading that stat hit a raw nerve in me...

Now...after acknowledging Dignan's request to stay on topic with my last posting, I'd like to stay with the program...first of all, I am sorry to hear about how others have also felt the pain of someone ending something with them...sixsix, i am glad to hear that you're doing a little better now...it is not an easy road and may have bumps along the way, but you turned a very important first corner...keep up the good work...

now my story...

I had by attack at the end of 2004...shortly after having it, my ex-gf (we were together for 3 years, lived together for 2 of them, were broken up for about a year at that time) contacted me out of the blue...after the usual small talk, i shared what was going on with me, with her...after hearing how she would always be there for me and talking 1-2x more, i haven't heard from her for about 2 years now...

it was a shock...especially with how bad i was feeling physically...i felt betrayed...but, with time, the pain slowly subsided...new people slowly entered my life and that helped some...time and distance also helped...the final step suprised me...somehow...someway...i eventual forgave her...and, i stopped hurting...it didn't happen overnight, but it eventually happened...

best to all,

Thinkingoutloud

Thinking,



Your situation reminds me of what happened between my wife and me. I met her in the spring of 1974. By that Christmas she knew that I would be asking her to marry me but at that point had not told me that she had suffered her first MS attack in 1971 and shortly after received a confirmed diagnosis.

At that time she had been engaged to another fellow and when he discovered that she had MS, he pulled the plug and was rather insensitive on how he conducted himself. This naturally left a bitter taste in Marg's mouth so she was scared to tell me of her situation, fearing I would react the same way. At this time, I knew something about MS because my uncle suffered from the disease so when Marg told me of her situation I had at least some understanding about the disease. Needless to say we got married and have remained so for over 31 years.

Unfortunately that scenario doesn't happen very often but rather your situation does. And I was told the younger the couple the more lack of understanding exists and thus the more chance of a break-up. Not a pleasant situation.

Harry

I'm 27 years old and was diaagnosed in Aug of 2005 my girlfriend is 31 and has two kids from another marriage. Her best friend just got divorced and is now single and partying constantly. My girlfriend feels like she is missing out on all the fun. That is the way I look at it. She started looking at me through her girlfriends eyes and it did not take long.