How do you handle family that expects you to be normal or resents your illness?
 

Tell them to go to....(you fill in the blank.)

Honestly, if they have nerve enough to say stuff like that, your family has major "boundary" issues. I suggest you read up on boundaries (there's actually a book by that name) and go from there.

Take care,

Missy

Yep......I'm thinking about "cutting them off". I know it sounds drastic, but I am sick and tired of being made out to be lazy, etc and I just don't have the time for negativity in my life anymore.

I think that I should focus on members of my family that are actually supportive and just ignore the others!!!!!

I know everyone grieves in their own way, but I am waaaaaaaaay tired of feeling guilty b/c I cannot do the things I use to do!!!!!

THanks for the advice!
Erin:hug:

educate.

hand them every bit of info you can get you hands on. give it to them bit by bit. be there and make them read it. highlight the parts and symptoms that you experience.

i don't have mg. i have a progressive back condition. so they can't see anything, which makes people think there is nothing wrong. they had no clue how high my pain levels are 24/7. until i shoved it in their face. :D

shocked my husband to actually see pictures and read the literature.

just try not to roll your eyes at them tooooo much when they make such stupid comments. don't bite your tongue too hard. :wink:

it's their own ignorance and laziness that they haven't taken a few minutes to educate themselves. :wink: we need to have some pity on them. :wink:

Been there
 

I know exactly what your going through. Until recently I had the same problem with my in-laws and even my own husband.

This last time I really, really had to stop myself from going postal on some people. These are harsh, but here are a few that flew out of my mouth without even thinking. But, believe it or not they got action.

To someone that showed doubt I even had a disease..." the last time I actually found the strength to pray, I prayed for cancer. Because with all of the wonderful advocates and advances in that disease, people have a better understanding, a better chance a getting treatment and patients are taking very seriously (as they should)".

To someone who thinks you are playing up your symptoms or being dramatic..."I really wish this disease was transmittable because I would then somehow find a way to give it to you and then you could then show me how to deal with it because you make it seem so easy".

Believe it or not, there's more, but I would probably get kicked out of the community

Ah yes... every family has them... I get that all the time - I look fine, normal, great, etc. so why can't I work etc.
When I got terminated from work for being out exceeding the limit, my FIL asked why not go back?
http://www.invisibledisabilities.org/booklet.htm has a pretty good booklet just to hand out to those who give you those silly statements - but in truth, until there is a magic wand of "in my shoes" no one will understand.

I would love to use the wand on a few docs.

It just stinks!
 

You know these same people saw me when I was too weak to walk, to talk, eat, etc and yet they still expect me to be back to my old self......this is the new me! Granted, I have an uncurable disease, but now I truly appreciate days when I feel good - cuz' I never know how long it will last......the phrase "Don't know what you got till it's gone" comes to mind.....

Everyday people take for GRANTED what we appreciate. The sad part is that I had to get that sick in order to truly appreciate being "well"................:(

I just think that for the time being, I'm going to have to just leave them alone and let them deal with their problems on their own...........I don't need the additional stress anyway!:) I have tried to explain my illness, but they simply do not care enough to really listen to me.

It just stuns me b/c I have always helped them out - that is what family is for in my opinion - and now when I need help, they aren't available!:(

Anyway, I AM thankful that this year I am strong enough to decorate my home and have a xmas party..........I'll try to look @ the bright side of things :D

:hug:Erin:hug:

Wow, I sympathise, I have a very understanding and loving family. They even have great senses of humour to, my sister and her husband, if they see I'm having trouble walking, will say, with lots of love meant, and laughter in thier voice, "C'mon RUN". Its nice to have people able to make fun of me when I'm not able to do things properly, it makes me laugh to.
My dear big sister will also on the odd occasion break out in sobs, saying "its just not fair, why should you have this"
I'm VERY greatful for such a loving caring family, this includes Mum Dad, Aunties, Unlces, Sisters and Brothers and inlaws and friends.

My husband is good - he knows I have problems with stairs so we have the staples "easy button" right there and he hits it when I get to the top... most people do not understand.

Wow - I just need to put in my 2 cents here...

I like to dwell on the positive. I think of my MG as a 'condition'. My maligant thymoma cancer that came with it (radiation and twice through chemotherapy for it), it too is a 'condition'.

Erin - I think they don't understand how you are well enough to decorate the house for the holidays, host a party for your husband, and go on a cruise, yet not be able to do everything else that isn't as much fun. Please do not take this as an attack. I am merely on the outside looking into your life through the postings here. I have MG too...and I know about ups and downs and crisis situations. But I believe that they see one thing (you having a good time) and hear another (about how you have an 'incurable disease').

I try not to think of MG as an 'incurable disease'. What IS an incurable disease is ALS. From diagnosis to death is an average of 3-5 years. There is no cure and no medication to allow a satisfactory life. Those with ALS end up needing 24 hour care because they are confined to a wheelchair. THAT would be far harder to handle than my MG which can be controlled with medication and other medical advances. I know that I have more than 5 years to live with my disease. (My apologizes to those with ALS who may read this post and any mis-information I may have made).

And yes, you're right on the head when we say we didn't appreciate how good things were before we got sick. But you have to remember how bad it was when you were in crisis, and then think about life now. I guess what I'm trying to say is that it could always be worse, and just take the good when you have it. We never know when luck will come our way and things will turn around.

MissyGirl - You hit it on the head with book about Boundaries. A great read - a MUST own for those of us with the Type 'A' personalities that feel compelled to have to do everything for everybody and never say no. No matter how much I highlight relevant issues to myself, I still manage not to be able to stay true to myself and my own personal boundaries. (I still think it stems from the fact that as girls were were raised to be 'obedient'.)

Rumpled - HAHAHAHA with the Easy Button. I sure understand the inside joke of that. How great you can keep the humor.

Miachris2 - I absolutely LOVED your quote - ..."I really wish this disease was transmittable because I would then somehow find a way to give it to you and then you could then show me how to deal with it because you make it seem so easy". So many times I too wish I could have said something to that effect.

Redtail - Your family sounds great... "C'mon RUN". That sure made me smile. Great way to keep spirits up.

As for me, I too have had my share of 'rudeness' and other adjectives and verbs that aren't fit for print. A few christmas' ago I was so sick with what I thought was the flu. It was over a week of being so weak all I could do was lay on the couch. I couldn't even muster enough strength to go drive a half hour for Christmas family dinner. (Not that I would have eaten, but it was Christmas). So I spent Christmas alone on my couch with my cat.

Now one of my brothers is the type that know everything. Well he stopped by on his way home. 2 hours later I finally put some clothes on and called a cab to take me to the hopsital. I ended up getting admitted for 6 days. Turns out that I was quite anemic from the Imuran. (67 on the hemoglobin scale). So to this day when my brother starts spouting off on me about medical this and that and I should have known better, then I remind him that he saw me 2 hours before I got admitted, and I ask him again ... "Did I look sick enough to you to be admitted to the hospital for 6 days Doctor?" He says no - therefore - enough said. So just because you don't look sick doesn't mean that you're not. Sometimes you need to remind your family of instances where they were rude and un-informed. It brings them back down to earth.

Oh - and I had my share of humorous moments with the MG too. Never having ever been really sick before the MG symptoms started, and then learning that I would be having a 'Cat' scan. Not knowing what it entailed, I was quite nervous. My husband picked up our cat - waved it back it forth in front of me - and said "now you've had a cat scan".

Hey - we take the humor where we can right?

Lydia

*clap clap clap*
We have the appearance of being ok, no one can look at anyone and see blood tests (even though I do try to point out that my tan and dark knuckles are from my high ACTH) and yeah, I have been told well, you look fine, did great today etc. when I know tomorrow or even later I will pay for trying to look normal and enjoying myself.

Who wants to be sick? I am not quite sure what they expect to see but I have been in SSDI (disability) for a couple of years and got it first try. That would not happen if I was just fine. Yeah, so I do push myself in the rare instances when they come around as I want to pretend for a while too - I know I am going to hurt later. I guess unless there is an obvious physcial manifestation - we need a sick-o-meter on our foreheads (which, by the way, would be most helpful for most docs who are oddly blind too!) so it is patently in front of their eyes.

I still get *well, maybe you will feel better tomorrow* and I roll my eyes - dude, do you not understand the meaning of CHRONIC? Hey, if the health fairy came along and waved her wand, I would dance naked in the streets (no one would like that), but I do not see that happening. I usually say fine when people ask me how I am and some take that, instead of being polite - as I am on my way to health! So if I tell them how I really am, they cannot understand it and if I am polite, they think I am great. No win.

End of rant...ooops.

Amen!
 

Beautifully written!!!!! Sooooooooooo true! At least things are better after this last IV IG - can't wait to have a port put in!!!!


Merry Xmas!!!!
:hug:ERin:hug:

OK - here goes!!!!!
 

The reason I was able to decorate my home, host an xmas party and go on a cruise was the fact that the week b/4 my cruise I had 5 straight days of IVIG - that always makes me feel like a million bucks! Plus, my neuro recently increased my steroids back to 20 mgs a day - YAY!!!!

I have my IV BIG every couple of months or so and thoroughly enjoy the results! I feel almost normal again!

Erin

support
 

I have no support at all except my grandmother who just recently started doing it......but stlil doest understand the disease......my husband I dont' know what his problem is......he has spoken with my doctor, read some literature........but the other day I was having a bad flare up .....weakness in upper ext. and double vision for about 3 weeks.....but siince I was albe to go get my neice a christmas present 2 days before that in the am.....he refused to drive me to the hospital.....and this is jus a mere example...........

You have us......
 

I know this is a small consolation, but you do have us! We understand what it is like to feel awful, but "look" normal - therefore people don't understand our illness.........It also stinks that so little is known about MG in the general public - everyone knows about MS, but MG is still rare -of course we would get this rare disease...............

Sounds like your family is in denial - like mine! I love going to work and taking care of my niece, but there are days when I have to work from home and just can't take care of my little girl.............IV IG always helps! In fact, it makes me feel amazing! Wish I could get it all the time!!!!!!

When were you diagnosed? What meds are you on? Do you have a good neuro? I'd love to hear more about you when you have time!

It's been almost 1 yr since my diagnosis (March 6th) and thymectomy (April 22) and I have really good days!

Hang in there!!!!

Erin:D:D

I haven't really told my family all the problems that I have been having...also, I haven't told work much either....My husband is very supportive and helps out so much. He cooks when I am really tired..He even hired a service to come and clean our house once a week..with 4 kids..it is really tough to do it all....He has been awesome...but I am soooso afraid if I continue to be "sick"..it will get old and he might resent all the stuff he is having to do....I try my best to hide my symptoms...but it is so hard to hide the bruises from falling.......and...the slurred speech has really raised some eyebrows lately....I am going to have to tell them eventually...:grouphug:

I know how you feel........sigh
 

:hug:My hubby has been great too! We are the lucky ones, cuz' a lot of spouses aren't quite so supportive - though some days he wants me to be my "old self" and it ain't happening for now!

Don't worry - think of it this way - if he was ill, you wouldn't leave, right? Before I was sick, my hubby had some health issues and I took care of him - now it's just the other way around.........

It' does sound like you really need medical attention for the fallling, though. You don't want to have a crisis - they suck!!!!!!!:(

Hang in there! I hope you feel better really soon!!!!

:hug:Erin

Hey Crickett! Just hang out with an empty bottle (plastic) of vodka and give them an wink and a smile!

When I had Cushing's, I would bruise at the drop of a hat so we used to joke about it a lot - as I used to commute and just being on the subway and bus would render me rather black and blue but I would tell people that my hubby, well... :D

Thankfully people know my hubby is nice and I am known for humor...

I'm heading to the big smoke to visit my brother and his family for a week. We are planning on going to the zoo, which will be no mean feat, considering its summer here, and the temps have been around 37C in Perth. I've decided to hire a wheelchair for the day, and big brother rekons its a great idea. My darling nephew said if Dad gets tired he will push me.....Wow, I think I am blessed having a caring understanding family

U are lucky to have such a great family!
 

U are lucky, but you are so sweet and positive that I imagine people find it EASY to be positive around you.........you know?

My family - not so much!!!! They still expect me to be the caregiver and resent the hell out of me not being able to...........

:hug:Erin

He he he, Erin you only see a certain part of my, believe me I can be a miserable so and so sometimes.

I guess everyone was use to me being so independant, living on my own(I was 30 when diagnosed) I did everything for myself, I use to service my car even, ride horses, work full days in stinking heat etc etc, to a blithering mess who couldn't even take 2 steps on her own. I think I just have a really caring loving family, and I reall truly appreciate every one of them!!

Doubtful, highly doubtful!!!!
 

Hey there! You are always so positive that I simply cannot imagine you any other way!:D

I know you have always been so kind to me - even when I whine and moan, so I know you have a heart of gold!:D

It is so hard trying to get used to not being as mobile, but we do what we have to ,right?

I just do not want to end up a bitter shell of my former self.....you know those people that are just miserable all the time? I refuse to be one of those!:D

You do have a great family! I hope and pray mine grows up real soon! I have always put family first and love them with all of my heart, but they irritate the crap out of me!!!!:D

Take care and have a GREAT trip!!!!!
Erin:hug:

I know I don't have the same condition but I could have written the rest...I lock normal on outside except for the curve in my back that my son now calls me Mrs C and it hurts my feelings! I could maybe live for another 40 years but my condition is progressive and I will no doubt end up in a WC and I can't lift over 15 lbs, can't even open a bottle of pop.

A few months ago with my dead bowel I really thought I had colon cancer and finally my family started paying attention to me for first time in years and I had the colonoscopy and it was ruled out and confirmed it was just part of my condition and suddenly back to no one cares so I was actually sad I did not have colon cancer, how sick is that?


My Dr said to buy a book called " But you don't look Sick". I too was family caregiver and now that I am useless have been kicked to the curb. I don't know who I am anymore, just that I am now an orphan!

Sorry for butting in!

Hey Junie!
 

Hey there! I'm so sorry you are having to go through this......It just frustrates the heck out of me.....

People can be so thoughtless sometimes.....especially when they have always counted on you to take care of them........

Hang in there and I'd love to hear from you soon!!!!


ERin:D
'd

hey Junie
 

You cerainly have reason to feel sad and it must hurt when your family don't show their care and understanding!!!!!!!!!!!!!!
with so many health problems as any one alone would be differcult to cope with hope your able to keep smiling at some time
As long as i know i'm doing my best i don't realy care about other peoples lack of understanding .................
good luck Alan:grouphug:

Thanks all,
I guess what I want most in the world is a real flesh and blood friend that I could hang out with, laugh with, and most of all trust and be believed! Everytime in past few years I thought I found one they turned out only wanting my pain meds:( It is very hard for me to trust anyone these days!

Hi Erin,

I think we all have had to deal w/ that issue, but to different degrees. I would strongly suggest that you give them some unbiased, written info. I found the info on the MGFA website-a note to caregivers (or titled something likethat?) is helpful. I think because often people don't SEE the MG illness, it is hard for them to grasp.

Hang in there & take care of you. Give your loved ones some time, and encourage them to educate themselves. Remember that it is not you, and that it is a process for everyone, your family & friends too! Keep the faith!

Nancy Lee