Hello all! I was wondering how you deal with family members that are bitter about your illness? I have always been the caregiver for my family - dad had a stroke, mom has a mental illness, gram had a heart transplant, etc, - but since my illness, it seems that my family (some members) actually RESENT my being ill!

They can't seem to get it through their thick skulls that I cannot do everything I did before......it is so darn frustrating!!! Some family members call this my "lazy bone" disease or tell me to "suck it up" - AUGH!!!!!

If any of you do have this problem, how do YOU handle it?

Thanks for your help!
Erin

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

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.

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.

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

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.

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

Erin

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