This Is MS Multiple Sclerosis Knowledge & Support Community

Here's a subject that probably hasn't been discussed for while, if ever, here. Relationships with people with MS.

As we all know, it was eventually determined that I do NOT have MS. Yippee! BUT..........of course after all of this time and my intense involvement with MS, I have made several friends with MS.

I just had a doctor appointment with my PCP a couple of days ago, and we got into an interesting discussion regarding relationships between two people with the same disease. I am in perhaps in an even more rare situation now, having had a brush with MS myself, but now find myself on the other side of the fence again.

Many of my friends, or should I say acquaintances, have MS. As we all know, cognitive problems oftentimes co-exist with having MS, and sometimes it can be very mild and probably unnoticeable to the person with MS, whereas it is more noticeable to one of their friends. I am finding that "rational" logical thought appears to perhaps be the most subtle expression of upcoming cognitive problems in a person with MS. That is what I am finding anyway from my friends with MS.

How can or do you handle something like that? When logic suddenly goes out the window and no matter what approach you attempt to get them to realize something is a bit skewed in their viewpoints (which is different from their normal personality), it doesn't seem to help?

Two questions arise from this. Are folks with MS suddenly finding (but they aren't sure why) that their relationships with others are becoming more difficult or "dramatic" somehow, but they aren't certain why or how? And for non-MSers involved in relationships with MSers, how do you handle the sudden non-logical behavior from an MS friend? How can you continue to support them and remain in the relationship when they will not allow you to? And then they somehow place some sort of undefinable "blame" on YOU, instead of on themselves, too, that you can't even seem to counteract?

I hope my questions are clear. If not, please let me know, and I can explain further.

Thanks for any input.

Deb

Deb, I've not found that to be the case with the half dozen local people I'm friends with who have ms. I think all of them have experienced a bit of cognitive decline but are at peace with the situation and seem to all be stable in their relationships. ( I take that back, one just got divorced)

The people who's relationships seem to be getting more difficult and who's personalities seem to be more dramatic are my female friends who are getting to a "certain age".

Peter

Ptwo,

Well, that certainly could explain a few things, also, I suppose!

Deb

Although my original post was about MS and relationships, without thinking about explaining further, I said:

As we all know, it was eventually determined that I do NOT have MS. Yippee!

I've had several questions regarding that. I guess I should have said "it was eventually determined that I do NOT have MS.........NOW." Bottom line, we don't know why. Has it been determined what I did/do have (all my life?).........it had been determined, so they thought; but my improvement, (not only in slowing down evident neurological deterioration progression, but in REVERSING it and unexplainably returning actual "lost function"), it can no longer be said that I have MS.........anymore.

I guess that's the best I can do.

Is it the drugs I'm on? Well, I've shown enough research to show it "could" certainly be!

Is it because I've got some other CNS disease, but not MS? Could be, but now I'm pretty much in the normal range of health in any event, so they STILL can't even say I have any particular type of neurological disease of ANY kind, really. (As long as I stay on my particular drug, diet, exercise and supplement routine.) It can be thought that I do, but there is no clinical proof or even major symptoms anymore. The only thing left is a little pain and stiffness, and some misc. minor stuff that cause no major problems, and isn't serious enough anymore to be able to be attributed to any "disease", per se.

My PCP and I, though, still call it MS for practical purposes. But clinically, no, I don't have MS anymore.

I know.............I go from being told I might have ALS, even, because I was getting so bad, to now not having anything? Uh huh..........let's not test the drugs I'm on. I certainly don't understand THAT logic, but who am I, huh?

I'm just happy I can say that not only my health has returned, but most of my lost function has returned also. THAT was the shocking part that holds no explanation.........the return of actual lost function. (And nope, the reversal was so much and so rapid, that they can't say it fits into RRMS, either. And ONLY happened rapidly after I started on the drugs, coincidentally. I figured they'd just say that proves I have RRMS....nope, I reversed farther back than that. They said "You do not have MS at all". Ok, I said!)

Only time will tell, now. And an autopsy some day. (I have donated my body to science for study.)

Deb

OddDuck wrote:Are folks with MS suddenly finding (but they aren't sure why) that their relationships with others are becoming more difficult or "dramatic" somehow, but they aren't certain why or how?

Well since undergoing the investigation and then receiving the dx itself is such a mind***** does an explanation need any other direct link to disease?
I'm not sure my relationships have changed too much (but still early for me - 6 months only since dx) but I do think I've become more emotional in recent years but maybe my age!
A friend at work offered this advice "You're entitled now to be selfish!" occasions recently when I've heeded this.

OddDuck wrote:As we all know, it was eventually determined that I do NOT have MS. Yippee!

Yippeee! indeed, deb.

John

***** choose expletive

PS I recommend a very good and in some way related novel Enduring Love by Iain McEwan. It looks at the effect on a relationship of a malicious infulence. (Health warning: Religious may not like this work.)

Hi, John! Thanks!

I totally agree with the selfish part at times, but someone deliberately withdrawing from friends and isolating themselves worries me just a tad.

But, I guess if that's what they want, then they will have nobody to BLAME later, either. I guess I can say I tried. (That was what I was able to tell my ex-husbands when they tried to beg me NOT to leave the marriage, AFTER I had tried everything to save it, and they weren't interested then! Once I had done everything I could, I was able to walk away confident that I had done my best, and they had nobody to blame but themselves when they realized they hadn't responded in time like they really wanted to. There is such a thing as too little, too late.)

Well, it's still hard, though..........for a while anyway.

hmmmmmmm...............I'll have to look into that book you mentioned!

Deb

EDIT: John, I just went to a webpage regarding that book, and there's a brief sample "discussion" portion there, where it mentions that one statement the narrator says is "I'm lingering in the prior moment because it was a time when other outcomes were still possible". I like THAT one! If that isn't thought provoking, I'm not sure what is!

As a matter of fact, I even told my ex-husband something very similar, now that I think about it. I had dragged the "prior moment" on for a bit, simply to give him all the chances he needed to voice himself. He had the power to change the outcome to whatever he truly wanted it to be. But he didn't attempt to express himself, so it didn't happen until the "moment" was finally closed, and I had moved on. And then it was too late. That always makes me sad when that happens.

It's doubly hard, though, to keep that "moment" open (or should I say close it) for someone when you are uncertain if their disease state isn't unfairly influencing their mind and perspective. As my question above poses, do you try to help them as a true friend would or just walk away like they are "indicating", but not SAYING outright, that they want you to do? That also could be looked at as being a true friend, by abiding by their wishes. But which is best in reality?

SECOND EDIT: But wait a minute! (Sorry, I'm musing.) Are THEY being a true friend to YOU in that situation? They have very effectively put all of the responsibility for the outcome of the relationship squarely on your shoulders, without trying to discuss the matter and reach a compromise that is fair and comfortable for both. Maybe it's ME who should become a tad more selfish (?) Interesting..............

Here is something that perhaps helps to put parameters around the question "when is it time to let go of a friendship or relationship with a chronically ill person":

What the Healthy Partner Can Give

• reassurance that they believe the illness is real
• confidence that they will be there for support
• special attention to the sufferer's needs, especially in times of pain and weakness
• communicating that no matter how sick the sufferer may look or feel, he or she is valuable as a person.

What the Sick Partner Can Give

• the integrity of telling the truth; neither exaggerating the illness nor hiding its reality
• commitment to the other person and the growth of the relationship
• appreciation and understanding for what the healthy partner is going through
• the gift of saving some energy for the other person and contributing what you can.

Chiara Lubich said, "We should live in such a way that in our last hours we will not regret having loved too little."

I would say, then, that if EACH person involved has at least tried their best to provide all of the above (depending on which side you are on in the equation), then the friendship is worth saving. If one or the other person has NOT been able to "give" at the very least those things listed above to the other, then the friendship is not worth "keeping the moment open for".

Well, going down the list as me being on the healthy side of the equation, I am confident (and probably can even provide proof) that I have done my best to give all I could. Going down the list with me being the chronically ill person that I was for so long, I still believe I had given each of those items to others. The situation I am in now, based on the above - with me being on the "healthy" side of the equation, is obviously not worth saving. Even though the person is suffering and I do care, they still have their commitment to the friendship to act upon, also. If they have been unable to do so (as I can see they have not), then the moment must be closed.

Thanks, John! That's what I needed!!!! You set me on the path to find the answer for myself!

Deb

EDIT: And as far as the situation of two people having the same condition, they are under double strain, it appears. They both will find themselves needing to provide BOTH list of items to each other. Hey.........That's what I told my PCP I had recently found out! He indicated it WAS something of a juggling act.........takes TWO very strong (actually I mean very "self aware") people to make it work probably - not just one.

Oh, and Peter!

You said, "I think all of them have experienced a bit of cognitive decline but are at peace with the situation...."

That's the key right there. Whether the person admits their cognitive decline and is at "peace" with the situation.

If they are not, then there is nothing more that I can do or say, is there? And that is probably why they may view things from a skewed perspective than is the norm for them (hence the viewpoint of minor things being suddenly "dramatic" or something). Denial and fear may be getting in the way. That's what I meant by being "self aware". That is a responsiblity that they owe to and have with themselves.

All I can do is offer my assistance, and if it is refused...........then that's that!

Deb

Deb,

Speaking as a caregiver, I find the most difficult part of coping with MS is the cognitive impairment that can take place with this disease. I find it very difficult to watch Marg become fatigued at times and then watch as the cognitive issue takes over. It can take place at various levels but at its most extreme point, the MS patient can become a totally different person.

When Marg's MS became SPMS back in 1994, the cognitive problems started to appear more frequently. As the incidents of fatigue increased, so did the cognitive problems. I found this very difficult to deal with and it was often the source of conflict between the two of us.

Fortunately, when Marg went on Prokarin in June of 2000, one of the symptoms that got greatly reduced was the cognitive issue. Her overall perception and awareness improved as did her communication. So far it has remained this way unless she over extends herself in the course of a day and becomes fatigued. It is amazing to see how quickly the fatigue brings on the cognitive problem.

Often, Marg will be out with a group of MS patients and engaged in conversation with them. It is quite interesting to see the difference in each person's cognitive level as they speak. For some it is minor but with others it is very noticeable.

Until the past couple of years, the MS medical world paid little attention to cognitive issues. Now they conduct clinical trials to try and understand it better. It can become a source of major problems in a relationship and how it is handled can mean the difference between a couple staying together and separating. It is just one more problem that MS patients have to deal with on a daily basis.

Harry

Hi, Harry!

Thanks for the input!

I wonder if THEY all know or can tell the way their conversations tend to go? Strangest thing I've ever observed, I think!

Well, now I'm certainly glad I personally gave my doctors a hard time for them wanting to ignore cognitive problems in MS!! And one was an MS specialist, for crying out loud! I guess the first step is increasing awareness of how prevalent it really is in MS. I'm finding that it may be more prevalent than one imagines.

How sad!!!

Deb

harry, thank you so much for sharing your personal experience. If you don't mind my asking, what exactly are some non-characteristic traits that emerge when she is fatigued in contrast to when she is not?

Arron wrote:harry, thank you so much for sharing your personal experience. If you don't mind my asking, what exactly are some non-characteristic traits that emerge when she is fatigued in contrast to when she is not?

Arron,

One of the first symptoms that happens is a slight slurring of speech. It is usually accompanied by a reduced awareness and the words start to come out more slowly. Reaction time to questions increases and you might get some inappropriate responses if the condition worsens. Focusing on the surroundings can become more difficult as well.

When Marg is feeling fine and is having a discussion with some of her friends who have MS, she notices the difficulty that some of these people are have in keeping a conversation going. Often they will have some difficulty in trying to express what they want to say and can't communicate their thoughts in what is considered a normal manner. Marg finds it necessary in these situations to constantly ask questions of the others and stimulate the conversation by trying to focus her friends on the topic being discussed. If this happens, for instance, during a lunch, Marg finds herself fairly tired by the end of the 1 1/2 hours and must "re-energize" herself with a rest....otherwise, she too can suffer from the fatigue and consequently end up in a depleted cognitive state.

There is no set pattern to all of this and it can vary widely on any given situation or any given day. Over a long period of time, this symptom of a chronic disease can wear out the MS patient and cause depression. We have read very often that MS patients become quite depressed and end up on medication to try and help this condition. And the cycle begins all over again! It's a situation that for many years, MS docs failed to pay much attention but fortunately now are become more aware.

Harry

Marg finds it necessary in these situations to constantly ask questions of the others and stimulate the conversation by trying to focus her friends on the topic being discussed.

That is similar to the difficulty I find. I end up thinking "what are they talking about?" The "viewpoint" becomes sort of "skewed". That's the best description I can come up with.

That's what I mean about "rational thought" or "logic". Sometimes it's simply like "what????" I end up asking a LOT of questions, also, in an attempt to dig deeper to find out how they got where they suddenly are.

Perhaps that's the wrong tactic to use, but if you are not aware that someone HAS any cognitive problems, especially subtle ones, it really throws you! It tires me out, also.

Once you realize that's what the confusion is, then it all makes sense. But unless you know up front, like Harry says............it can cause sudden and unforeseen complications.

I totally agree with Harry, also, that the MS "world" needs to really look close for this medical and clinical situation instead of passing it all off to either something psychogenic and unrelated, or passing it off to someone just being unable to handle emotions. I think it goes deeper than that in connection with MS.

Deb