Dealing with Indifference

[dm0329]

How do you deal with "indifference" by others? I'm having difficulty adjusting to my family's indifference to my MS. I was dx 18 years ago, started on Avonex 15 years ago, my MS has progressed slowly.

I do feel blessed to have the options of tx's today, but I'm no longer working due to fatigue, cognitive issues, balance, bladder, blind in right eye, etc. I feel like "a little old lady" in my mid-forties. I assume that, since I was always the over-achiever, they "don't get it."

I was dx in my twenties and put up a good fight against the MonSter. I pushed through a bad marriage, worked hard on completing my master's degree, etc. I felt it was a "race to the finish" in doing all that I could. The more I accomplished and the faster I went. . .maybe I could outpace the MonSter. Denial can be nice, too.

But, because "I still look so good" my family is just horrible at times. I'm told "I'm lazy and I don't deserve SSDI" etc. I get little help from my family and/or the government. I get enough to get by I suppose.

But, at times, I am outraged at their indifference! Really?! I want to ask: You do remember that I was dx with multiple sclerosis in my twenties, You do understand that MS is a progressive, debilitating, disease, etc. . .UGH!!!

Has anyone dealt with these issues? I guess that venting can help, too, right?

[Blessings2You]

Telling a person with a progressive incurable disease that he or she is lazy and doesn't deserve SSDI is not "indifference". It is verbal abuse.

[1936siol]

Dealing with indifference

I am so much luckier then you. My family has always been very understanding but I do understand exactly what you are saying. I have seen it with so many others.

I used to teach special Education and the way some of those children are treated for something they have no contral over is terrible. The chances of changing those who don't understand is very difficult. I learned that it doesn't pay to care what others think. If they understand great. If they don't the heck with them. You know what you can and can't do.

Lois

[Daisy Dead Petals]

Familiarity breeds contempt. I know what you are going through. The blatant ignorance as well as the subtle. The masking of intolerance as unawareness. The sick thrill of feeding you soup and keeping the spoon out of reach. Leaving you without water for almost two days. These things happen - and worse.

People get sick of too much of anything. It great fortune to have those on whom you can depend. It is also a great disfortune when the only ones you have to help you - grow an active disdain.

MS doesn't have the highest suicide rate for no reason. You learn tricks. Hide food where you can reach it.

[valeriem2220]

I am yet to be diagnosed and I have come across this.
People assume since I am looking good I am also feeling good. They have no clue that I am battling almost every single day.
With me not being able to get diagnosed it is just feeding this fire. These people assume that it should just be cut and dry and on my first visit the Drs would have diagnosed me. No matter how often I have said that it doesn't work that way all of the time.

I'm learning to ignore them and I refuse to try and defend myself any longer. If they have this opinion then I am not going to be the one to try and educate them. I am a firm believer in you shouldn't judge if you have no clue....

[KalikaLily]

I am going through this now with a lot of my family... I was diagnosed two months ago, and I a progressing at such a rapid rate that my Neuro's head is spinning.... But yes.. I am just lazy.
Apparently I have been so lazy since I was a teenager (apparently doc's figure I have had it since I was 16) and MAN!! All I ever do is complain... I am 24, mother of two who is scared to leave her house because my legs will give out on my 90% of the time, and lord knows I won't make it to a bathroom in time.
Until I get back on my feet (literally) I have basically been parenting from bed. Thankfully my hubby is also home all day as well, so he gets the brunt of it, but because I am bed ridden, I am an awful mother and should have social services up my alley.
The list goes on and on, and never seems to end. What I have learned that helps is to find those few people in your life who you can go to no matter how crummy things are. Keep them close, and know that how THEY feel about you is what matters <3

[sloth]

All the replies here are awesome! thanks for the post!
I cant poss' say anything that hasnt been said.

But...

Im blessed with support now, wasnt early on w/ family.
Always w/ hubby .

Friends and neighbors cont' to say stupid things...I guess its human nature to have to walk in ones shoes before we "get it" its sad and cruel but I admit I was once one of those.

My skin is thicker now, the only support whose would crush me if lost was hubbies.

Hang in there, take care of you

[Thinkimjob]

I can't be the only one who's worried about Daisy DP's situation.
That's not indifference, that's cruelty. That's illegal.
Daisy, no one should be treating you that way.

[NickyOz]

dm that is so sad. Not only do people not get it but if you don,t have a machete down the middle of your head people think you are OK. So many MS symptoms are hidden. MS makes you realise who the good people in the world are and who isn't.

PS: Sloth - that is a cool picture you have. I love it

[valeriem2220]

Agreed Nicky. The last person I ever thought that would be here for me and be understanding and compassionate about all of this is about the only person I can depend on to understand. My ex-husband.
When the Doctors said MS at first he did nothing but research it and search out a man at work whom he knew had the disease. He learned everything he could and now on the day I say I am not feeling well he is insistent that I lay down or be careful and he calls me every morning after work to check up on me and ask how my night went.
My parents are somewhat compassionate but are nothing like he has been. He has really been my rock through all of this and I am grateful to have him.

[Lillyheart]

Familiarity breeds contempt. I know what you are going through. The blatant ignorance as well as the subtle. The masking of intolerance as unawareness. The sick thrill of feeding you soup and keeping the spoon out of reach. Leaving you without water for almost two days. These things happen - and worse.

People get sick of too much of anything. It great fortune to have those on whom you can depend. It is also a great disfortune when the only ones you have to help you - grow an active disdain.

MS doesn't have the highest suicide rate for no reason. You learn tricks. Hide food where you can reach it.

This is horrible! It's downright illegal! No one should treat a disabled or vulnerable person like that.

I pray things get better for you, or that there is someone who can help you....

[NickyOz]

Husbands

Do you know what I think about husbands (past or present) is that they are our soul mates and there are no coincidences in meeting them. Apart from husbands or ex that you can't stand - that is just unfortunate and you probably did something mean in your past life (like you were a dodgy car salesman)

[Lexie]

I have found that I do not need people like this in my life. So I withdraw and choose my friends AND family carefully. Life is too short to deal with people like that. I face this at work and I have bought myself a little ipod and listen to praise music all day while I am working. That way it does not seem rude if I don't want to be included in their selfish conversations. It's been hard because I was a "Please Everybody" Person until I turned 40 and realized that there was no way I could please everyone. It has been an eye opening experience and a good one. I have less friends but more true friends than ever before! Just be yourself and find a few interests that you can do all by yourself. That has really helped me!

[Waydwnsouth1]

I get that from time to time myself. I once challenged someone to swap places with me for 48 hrs. Well needless to say they refused.

[asiel1]

I get that from time to time myself. I once challenged someone to swap places with me for 48 hrs. Well needless to say they refused.

Girl, I hear ya. You make me laugh.

I do not really get indifference from my friends and family. They see me at my worst and best. Even the cashiers at my local store are sweethearts to me.

It would seem the only difference I am getting is from neurologists.

take care.
Lbj.