[jnewk]

hi everyone

I don't post too much on here but I have to share a bit and maybe ask you all what do you say to the ignorant people who don't understand our disease?

I have a friend (a long time friend) who is very helpful and is a good friend but she is extremely dismissive of my MS. Particularly, the heat. I live in Las Vegas and am having to move in the middle of the summer (not at all a good thing) and I'm doing my best to organize by tasks and my energy according to the heat.

She's the friend who says "oh I have that" or "oh my other friend" bla bla bla. I've tried to explain to her that I am not talking about a normal level of heat intolerance...the kind anyone would have here in the desert I'm talking about its dangerous for me. Dangerous. I'm also a heart patient and am on a lot of heart meds. the heat is dangerous for that too. but she is always so dismissive and its frustrating to me.

She is an extremely self-obsessed person (I think she's bipolar) so I give her allowance for that interfering with her lack of empathy. But I don't know what to say to her to make her "get it". And I doubt anyone could say anything but it just irritates the crap out of me.

Because I'm moving and because she's been helpful to me (she loaned me some money)....she feels like she can do or say whatever. If I didn't need her help I would just keep my distance until some time had passed. I know this sounds like high school garbage but its a real problem for me.

Any suggestions? Similar experiences?

[NurseNancy]

well, honestly, it sounds like this friend may have to be dismissed by you.
you could try a serious sit down 1 to 1 talk.
you could try giving her some printed MS info on the subject.
or just con't to ignore her but set firm limits based on your knowledge of your body.

after all this is accomplished for you start to keep your distance. if she asks anything tell her the truth.

the summer can be a danger for me too. if i get too hot i can almost be paralyzed. my legs and muscles don't work and i get short of breath.

have you tried any cooling devices? collars? vests? they're not a cure but do help.

[Sparky10]

Originally Posted by jnewk

She is an extremely self-obsessed person (I think she's bipolar) so I give her allowance for that interfering with her lack of empathy. But I don't know what to say to her to make her "get it". And I doubt anyone could say anything but it just irritates the crap out of me.

You explained it all right here. You can explain your situation with 8x10 color glossy photos with circles and arrows and a paragraph on the back of each one, but you can't change her personality. You might try blaming your heart condition more than the MS but I doubt that will change anything.

Try giving her the job of watching out for you. Maybe if she feels needed for something important, to concentrate her attention on your symptoms, she'll quit dismissing them.

Good luck! How frustrating it must be to have such a good friend who is so irritating.

[nemsmom]

I have come across so many people who are dismissive of my MS symptoms. Everybody wants to say, oh I have that too.

Well I avoid those I can, but for those that I can't I try to ignore this behavior and not bring up any of my symptoms around them. If I can't do something with them because of my health, I have to make up some other excuse. They tend to be more excepting of some lame excuse than they are of the truth about my health.

Also, for those who "have it all" too, I try to remember that, while they may not have what I have, they could be struggling with something as well. I am not them. I can't stand when people think what I'm going through isn't as bad as I'm saying it is, so I would be just as bad as them if said that to or about anyone else.

I don't think they are trying to be rude. I think they are just trying to keep up the conversation and don't know what else to say. I do wish they wouldn't though because it is very frustrating.

I hope you find a way to get around this with your friend. It is very hard to lose a friend because of your health. Good luck!

[Kitty]

It's so frustrating to be made to feel like you have to explain every last thing to people. I have friends and some family members who try to offer suggestions and/or alternatives when I say I can't do something. As much as I know they are just trying to help it gets so tiring to have to explain my reasons over and over again. I've gotten to the point where I don't even tell anyone if I'm feeling bad or need something but can't go out to get it. It's a very isolating feeling. I really hope your "friend" shapes up.

[SallyC]

Originally Posted by Sparky10

Try giving her the job of watching out for you. Maybe if she feels needed for sometriend"hing important, to concentrate her attention on your symptoms, she'll quit dismissing them.

This is a great idea = "Not doing so well, could sure use your
help today, my friend"

[Jules A]

It was wondering why you would be friends with someone like you described until you added that she has lent you money and is helping you move.

Maybe you owe it to her to be a bit more tolerant of her short comings?

[Debbie D]

It is partly the inability for people to "see" what we're experiencing. It's also partly ignorance and an inability to walk in another's shoes

I'm trying to learn to listen and empathize when others I know are dealing with symptoms from some other disease. I am also not going through the effort to explain to people what I experience and what is dangerous for me. Unfortunately the result when heat or stress comes make everything very obvious

[templejg]

I'm trying to learn to listen and empathize when others I know are dealing with symptoms from some other disease. I am also not going through the effort to explain to people what I experience and what is dangerous for me. Unfortunately the result when heat or stress comes make everything very obvious[/QUOTE]

I believe I am an extremely empathatic person and care much about others. My last part-time position, most rewarding position, and last time I could work was at a Homeless Shelter. Prior to this I had worked 26 years at a very large company. I had finally found my calling, but illness stopped me from working.

I don't know if you or anyone want to address this question. Does MS cause extreme warmth, sweating, and fevers, normally from 99-4 to 99.9, sometimes over 100, but seldom.

[Sparky10]

Originally Posted by templejg

I don't know if you or anyone want to address this question. Does MS cause extreme warmth, sweating, and fevers, normally from 99-4 to 99.9, sometimes over 100, but seldom.

Possibly, a low grade infection. We with MS are subject to UTIs (Urinary Tract Infections), and the symptoms don't always show. A trip to your Dr, or maybe an urgent care facility, might be in order.

Some people just have a higher normal temp than others, but best to get checked out before an infection digs in!