the heat and the ignorance
 

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?

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.

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. :(

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!

It's so frustrating to be made to feel like you have to explain every last thing to people. :rolleyes: 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.

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

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. :rolleyes:

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

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:(

Extreme heat, sweating, and frequent temps - not Menapouse
 

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.

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!

Thanks for your reply Judy. I do use cooling aids....an ice pack packed stuffed in my bra works wonders!

I believe that my friend is more blatant about her dismissing and her ignorance because of her mental illness...in general she has no real sense of empathy. And I know that....it just chaps me sometimes when I'm feeling esp vulnerable...like moving in 108 degrees. But I will get thru it. And I have taken time off from most of the people who do that to me. In fact, I didn't speak with her for a year because of her behavior.
I really appreciate your thoughts so thank you.
janet

So true Sparky....a good friend with some extremely annoying traits. I know its her mental illness. She does her best to be a good friend its just her issues get the best of her (as my issues do me) hers happens to be mental illness mine is neurological. but damn it just gets to me sometimes. And shes not the only one of course.

I do appreciate that I can come here and ***** about it and be heard. sometimes I feel so damn isolated. so thank you.

Thanks Kitty....yes its so isolating isn't it? and I also have to keep explaining the same stuff over and over. And I know its because they can't "see" it. But damn I wish they would try to remember. Not going to happen but I can wish.

I just say the same thing to everyone......"I can feel it more than you can see it". That seems to work - most of the time.

Like with most things, it's hard to explain to someone what we feel if they have not experienced it themselves. Kelly gave a great response. You could easily say that you feel the heat more than others and it's just part of the disease and then drop the subject without further explanation. I find that simple statements like that work best.

Good luck with your move. :hug:

Yea for Alice's Restaurant reference!
 

Off to the Group W bench with you, Sparky!

Don't mind me, I just meandered over here from the PN forum because they found lesions on my spine and are pointing me toward an MS dx now.

I'm sorry that your friend is being so frustrating, jnewk. Whether it turns out that I have MS or not, you have my sympathy. There's no shortage of idgits where neurological problems are concerned. Some of them are even medical practitioners. :mad:

A reference to Arlo Guthrie's "Alice's Restaurant." :):):)
ANN

My normal temperature is betwee 96.5 and 97.5. When I'm at 97.5 I congratulate myself for being so warm. But I do suffer from heat just as we all do.
It really changes one's inner self to have to always explain. I wait for the right moment, never telling people over and over again, but making it really clear when I have to. Even raising my voice to get their attention. With some people, it never works.

My poor grandma, my father's mother, had 14 abdominal scars from exploratory operations to find the source of her pain. She showed my mom her scars and my mom thought she was a hypochondriac. My mom thought my father was one too, as he had the same problem, and then I became the hypochondriac dujour. We all had Porphyria, undiagnosed until late in my life,never in my grandma or father's life. So we live with this inner wound all our lives, shrugging it off sometimes, other times taking it philosophically, and sometimes yelling loud enough to be heard!!!

So sorry Murial. Just think about all of Ancestors before us, who
had MS and were thought of as crazy or malingerers.:eek::(

Sally, I actually cry sometimes about an ancestor who had MS, not a direct ancestor but my dad's cousin. He drowned. He had a wife and daughter. I met him once. But I cry that I didn't know him better. I remember him stumbling out of our doorway when I was five years old. I have never forgotten. His name was Adrian Delsman. I wish I had some contact with his family. It was a large clan--eight siblings. I did go to a funeral of the last of his siblings, and the rest of them seemed to be very healthy, but as we know that can be misleading.