Hey guys,

Just wondering if some acquaintances treat you differently since you've developed your sx. There's a large group of people who I used to associated with who are convinced that I have a curse on me (LOL)....When I see some of them, they even offer special stones, or prayers to protect against the 'evil eye.' Just wondering if you guys have experienced unusual feedback from those around you since you've become sick. I'm sure it's well-meaning, but it's kinda scary, and upsetting...Some of these people avoid me as if I have Leprosy or something...Sometimes I feel very retro- as in Before Christ retro! lol

Can't say I've encountered anything like that, Nicky. I usually get...are you OK? Or how are you feeling? But there is a large difference in our ages. Oftentimes, younger adults have no reference point to understand illness - especially one as 'snowflaky' as MG!!

If it really bothers you, pull one of them aside sometime for a heart to heart on their perceptions and intent.

Sue

I've been miffed at certain friends who don't take it seriously! One of them said, "Oh, yes, my mother thinks she has that." Me: "Really?!? What are her symptoms?" Friend: "Oh, when she exercises a lot, she gets tired."

Another friend thought it just meant you have an eyelid that droops sometimes. Another one said, after I told her there was a drug I was hoping would help me, "Oh, well, you know me--I don't really believe in drugs." And another one asked me to drive to her house twice a day to feed her cats while she took a trip.

I guess it's just because most people haven't heard of the disease. It's so strange--if you tell them you have muscle weakness, they think you're just sort of tired. If you tell them you have trouble holding up your head--then they're really alarmed!

Nicky, sorry people are treating you that way.

I have to admit that most people treat me nice when they know I have MG. Most of my family pretend nothing is wrong, but now that I think about it most of them don't make an effort to talk to me much, and these are the ones that live far away.

I don't understand why two members of my family treat me with such a lack of understanding, I get a lot of "oh, your just trying to make me feel bad" or similar things. If I could I would hide the way I feel but MG has other plans.

Sometimes I get ordered around, which never happened before MG, like I have something wrong with my mind...I have gotten mad about this and said that I may be weak and have some issues but that nothing is wrong with my mind and don't need to be told what to do.

Ok, so this subject made me angry. Yes, people treat me differently and I find myself getting distant from people because it hurts.

I wish I could make it better.

On the good side, the people I work for (I am self employed and have 24 ongoing customers) are very nice and understanding. When I got MG I had to tell them something since I was unable to work for a while and I decided to be honest with them about MG (I thought it best to tell them since I look kind of funny sometimes with the lopsided face and the occasional limp). All of them were understanding and very nice and concerned. Of course I am picky when choosing people I work for and this must have been part of the reason they are so nice, I only work for nice people. To this day all of them ask occasionally how I am doing. And I am still working for them so this is great! I couldn't ask for better people to work for.

As for me, I need to work on finding friends since I really don't have any now. I did have a few friends but since I am rarely able to do any of my previous activities with them, these friendships are fading if not gone...

Nicky, sorry for venting my frustrations in your post. I found myself unable to answer your question simply and just had to let it all out.

Nicky, Yes.

Sometimes my family members think they needed to "take care" of me, or "handle" me. Nope, don't need that.

My friends have accepted me for who I am.

Complete strangers are always giving me funny stares when I park in the Handicapped parking places or use the carts in the stores. Makes me feel like I'm in a zoo.

Though I have never had anyone try to "fix" me, like you have. Are your friends Freemasons? Cause what's up with the evil eye crap? You have an unhappy immune system, which probably was "fixed" by your genetics or something equally out of your control. Maybe they feel helpless and what to do anything they can think of to help. Only they know.

I refer to this in my book. This isn't the best resource for this but probably the most interesting. You have to go all the way back to Hippocrates to get a good read on this topic. Way back when, like you said, before Christ, doctors thought that people needed to purge bodily fluids from their body to get better. Yeah, like bloodletting. There is actually a reference to bulimia in Hippocrates' writing. Back then, they called these fluids the "Four Cardinal Humors."

http://intraspec.ca/temper0.php

It's interesting but no one ever got anywhere by labeling people in such a black and white way.

Do you think your friends will bring in an exorcist too?!

I think what we need most is someone to talk to, to treat us "normal" and to accept and love us for who we are under this damn disease. At least that's what I need.

Susan, I wish you had more supportive people around you. It's so hard to have friends because socializing is so hard.

Abby, Our "normal" is not other people's normal. So when you tell someone who isn't sick that, My legs are really weak today," they may be very concerned. They might even go into panic mode. It's the same as them saying they had a tough day at work. Our disease becomes our job and we complain about it just like they do their job.

Annie

Hey guys,

Suev,

It doesn't bother me too much...It does in the moment, if I have to be around them, but otherwise, I know that it's their ignorance, not mine...I find it a bit funny that people could believe things like that- that a person could get an illness because God is punishing them or because someone cursed them...It frustrates me more than anything, but because I don't know them that well, and have trouble talking when I get frustrated, I don't say much....I just try my best to get away from them as quickly as possible...lol...I do have a few stones now, though, which look pretty, so that's good...Sometimes, the beliefs are in a spirit of kindness, and that's nice...

Stellatum,

Oh boy...It frustrates me to no end when someone thinks that the drugs I take are painkillers or something (mestinon, immunosuppresants, pred.), or that if I eat more honey and/or halal meat, I will get better...It's just because I'm eating bad foods that I got this...The medication thing is the most annoying, though, since some think that they are almost optional when they so aren't! I know what you mean...I describe it that way too- that it's a muscle weakness disease, but those words don't really convey the degree of it well....hehe

Desert,

Don't worry...I started this for everyone...Talk away! I know what you mean about the friends thing, and feeling lonely...I feel that way too...There are lots of things going on right now, but I don't have the energy or muscle strength to be involved enthusiastically...I always worry that I will be a bummer for everyone, and rain on the parade...The fatigue I feel and the fact taht my face gets weak just flat-out makes me *look* like a bummer/gloomy gus, I think...My fam., friends complain that I never come out...I know taht I should, but I don't have the energy to go to parties anymore, or be in situations where I have to socialize with lots of people I don't know....I feel like a big baby...But I *want* to want to do those things again, but right now, I just don't feel like it...I feel like I'll have to explain, 'Oh, if my speech gets incomprehensible, please note that I'm not wasted, I have this disease...' It just seems like such a weird thing to have to go through in such a setting...*sigh*lol

Sorry about your friendships...You still have us, though! And guess what, you're just feeling sick right now...You'll feel better again, and will be able to make new friends! That's how I feel about my situation...i get really depressed sometimes, but I know that I'll feel happy again...Something will budge, and I'll either adjust to this, or a miracle will happen, and it'll subside! Same for us all

Nicky

Hi Annie,

LOL about the free masons thing...lol...They aren't really my friends...I guess they used to be in a distant way through my boyfriend, but since I've become sick, and they seem to avoid me, I don't consider them to be friends anymore...It's a cultural thing...My bf is from a country in the Middle East....I'm not saying that all people from this country believe in witchcraft and such, but all of his friends and family do for the most part- and he has a lot of friends, so word has travelled throughout the community far and wide...We've been together for over 10-years, so everyone knows about our relationship...Because we're not married, and I'm not from the same cultural background, people say that i'm cursed- that God is punishing me....They also say taht i'm cursed because some distant relatives wanted him to marry girls that they knew, and because he said no, a curse was put on me...It gets really irritating, and after hearing it constantly, it can make you a bit crazy, actually sorta believing it...lol...There actually were some odd things taht happened before I got sick (my picture was cut out of some photos and was nowhere to be found, foudn weird powders in my jacket pocket), and I wouldn't be surprised if someone did try to put a curse on me, but whether that's the problem or not, I totally don't believe it is...IT's kinda disheartening, though- finding out that someone wants you dead/sick! LOL

About the exorcist thing, actually, someone did suggest that i see a mullah to rid me of bad spirits...I'm telling you, it has become scary...This person is actually a close relative of my bf...i just don't even want to be around them anymore if this is what they really believe...It's just time-consuming...I don't have time, or want to have time for that sorta nonsense...It's bad enough having to worry about being able to move food around in my mouth so I can swallow it, but then to have to worry about goblins in the closet, or Satan under my bed doesn't make things easier...lol...Especially since I got over being scared of ghosts when I was little...I don't want to be scared of that again!

But then again, with this disease, if a spiritual adviser might be able to get rid of it, I think I would be ready and willing to do anything if it were just once, and it meant being cured!

Nicky,

Wow, you are a hero, in my book, for dealing with this so well! As if you didn't have enough to deal with already!

Sometimes I think that people are desperate to find a reason why we came down with this disease so that they can reassure themselves that it can't happen to them. It's scary to look at someone who's "stricken" and realize that life's uncertain like that!

Abby

when I was really depressed and down constantly, not fully understanding the disease, people around me just avoided me since they knew I didnt want to do anything. Now its more like, well, lets ask him and we can work around his schedule, is this a good day, is that a good time.\?


feh. my true friends take it in stride like I do, know I have my good days and my bad days, thankgod, alot of them have been good lately.

Stellatum,

I completely agree with you...I think that it's just the way some people look at things. They feel that if something bad happens to someone, they must have earned it, otherwise life must be really unfair. I think that it's hard for people to compromise 'fair' with creationism at times...I know that I do too...I definately went through a weird stage like this when my speech was deteriorating...I had other sx before that, but I just couldn't handle the speech thing as it affected my livelyhood, being able to socialize...and I've always been a self-conscious person, so I felt utterly embarassed by this illness....Anyway, I went through months and months of being petrified that I was going to die (also had a thymoma, and was scared of the things i was reading about it), and 'this is so unfair, how can this be,' and all that stuff...I still feel like that at times, but i feel like it's run its course (that stage, I mean)...I think that there are stages we all go through when we're faced with a chronic disease like this that impacts us so much...i'm getting used to it, as much as I resisted, and that's okay...There's still plenty I can do...I can still be happy...And there's always the hope that things will get even better...Imagine 30 or so years ago when this was considered an almost fatal illness?

Allen,

That's great that your friends are coming around...I completely empathise with your feelings of being depressed and down constantly...Many friends and acquaintances would ask me to go out, and I would always say no...i just felt miserable...When I was around people, I looked miserable too (hard to hide, also couldn't make good facial expressions lol!), and I could feel them kinda wanting to not be around me...The good ones understand what you're going through, and give you space when you need it, like you say.

Nicky