An Observation in the Neuro waiting room...

[freedom1]

JanaK, I think your anger is a little misplaced and that most people here will take exception to that anger. If not all, then the vast majority of people on this board have worked and paid taxes. I will go further to say that most NEVER WANTED to stop working!

I got my first job at 16, I worked through high school and college and then worked full time until I was 49 years old. I first started having problems at 20, I graduated from college at 21, got married, had 3 kids, earned my MBA and broke through glass ceilings in my chosen career, all while being sick. I also did not have my taxes " just sucked out of my paycheck" every April I wrote a check to the IRS on top of what they already took.

Yes there are people out there who work the system. Always will be. Yet as someone who suffers from MS then I think you know how invisible this illness can be. You also know that symptoms not only vary from day to day but from hour to hour.

If someone wants to do little things for themselves because psychologically it makes them feel better inspite of how aweful they feel then they should. If looking good when leaving the house because the rest of the time you walk around in sweats makes them feel better then they should. Mind over matter is a very real phenomenon.

There is an old saying don't judge a book by it's cover. As people with an illness that doesn't always make us look sick we above others should heed that advice. Everything isn't always as it looks.

[MrsBones]

This thread truly saddens me.

So many posts on MSWorld speak of issues we have because we "look to good" and here we have judgments made because someone looks too bad... like they were "on withdrawl from a drug" and another because he looked like" he was of the "not so good" kind". Shouldn't we know better from our own experiences that we can't judge from how a person looks?

A small piece of conversation w/o a whole story automatically makes someone a person trying to scam the system. This young woman could have undxd symptoms, be out of work due to this mysterious illness and desperately needs the dx her dr has likely given her pending proof to try and get the financial aid needed. There are ways her statement could have been taken besides being someone trying to work the system.

Other comments made about violence over parking spaces and uninsured drivers, working/taxes, insinuations that people on disability shouldn't have fun or go to salons if they choose to and statements like, "Scum/Scam people usually carry a stench." are disheartening and disturbing to see.

There are people abusing SSDI, to be sure, but it's so upsetting to me to see some who are in the same boat as the rest of us either on disability or possibly needing it in the future make snap judgments about folks like this.

There may have been people who looked at you in a similar light...you look "too good" to be disabled, therefore you aren't.

Well said, freedom1:

There is an old saying don't judge a book by it's cover. As people with an illness that doesn't always make us look sick we above others should heed that advice. Everything isn't always as it looks.

I think it is time to go back to lurking now.

[KatieDidNOT]

I always keep a tire iron inside my car. It's there mostly in the event an uninsured driver rear-ends me. (Twice in the last year this has happened.) I always ask them to pick a knee or call the cops. Anyway- the tire iron is a good idea for parking with a handicapped placard while guilty of looking good. Show them that your arms function rather well and that they, too, can earn a placard.

This is ridiculous, not even funny, and I seriously would not recommend it or you might find yourself "looking good" in jail. Would not want that now would we?

Katie

[KatieDidNOT]

Mrs Bones

Please..don't get sad. There are some not so nice people out there. It is a reality.

And please don't lurk. I have read some of your posts and they have been REALLY helpful to me. You have some sage advice and wisdom.

Katie

[jifr]

Responses...

Hi Guys! Thanks for the great replies and comments! It's interesting to see how we, as MSers, give allowances for some things and not for others.

The reason I feel the way I do about it is that, as a MSer, I may eventually need to get on SSDI and the people who are intentionally "out to get something for nothing" make it harder for the people with real needs.

This is a result of my own personal experience with someone who was out to get something from nothing. This person 1- had a work comp injury and tried to cheat the system (get something for nothing) and then 2 - went step by step through a process to intentionally be declared 51% disabled so he could get on SSDI. Which he did.

He now lives his life as a carpenter.

So, I guess I am partially jaded when it comes to someone saying that they are "intentionally" ("Intentionally" being the operative word and thrust of my initial post) trying to get a diagnosis specifically so they can be on SSDI. That's selfish, abusive, illegal, immoral....

I agree some people just don't know and are truly seeking a diagnosis and realize the repurcussions of a MS diagnosis. Absolutely. But, those are not the people I am talking about. I think that people in need ought to get, without hassle, the benefits they need and are entitled to. I hate that they are encumbered by those who have come before them with the intent to take advantage of the system.

I work in insurance and I see a lot of fraud. I don't want it to hurt us MSers but it does. And it makes me sad.

:-(

Thank you for taking the time to chime in! I like to see what people think about topics like this. Jen

[Imagine]

Whilst waiting for my 3 hour tour in my beloved MRI machine, I observed a young woman sitting with an older man. The woman looked like she was on withdrawl from a drug and the man looked like he was of the "not so good" kind.

Okay. Really think about this. There are so many people who are "furious," at a world of others who rarely give them a second thought. We are all suffering from something; and IF your accessment of this young woman was accurate (drug withdrawl)-- she most certainly is suffering.

"Not so good kind,"...hmmm. With all due respect, please think about the rate of unemployment/record breaking forclosures;etc- My point is this: you have no idea what has happened/is happening in anyone's life, outside of your own.

I believe that compassion and kindness can heal the world. Judgement and negativity only serves to hurt the person who is judgmental and angry. People w/ms cannot afford to use their energy in a negative fashion that isin't solution oriented.

Is it possible that your anger stems from how you feel about having ms; and you're projecting it elsewhere? Know that I am only trying to help, okay? [I]Love & Light...
[I]Be Well.
Shalom,
Suzanne

P.S. HAPPY CHANUKAH

[freedom1]

When I first read this I knew I had to reply but didn't know how. I was angry because I felt that this person was attacking me for getting my nails and hair done. As I reread it I realized I was sad more than angry because people have become so callous and there is so much hate and anger at our neighbors. I feel sorry for anyone that carries so much hate in their hearts.

This Christmas Season the news has brought me to tears with all of the people lining up for food and gifts for their children. My husband and I decided that instead of buying a bunch of meaningless gifts to donate that money to a local charity so that someone else might enjoy the good fortune that we have always had. I was surprised at the family response. Not from my kids, they were all for it, but from the aunts and uncles and friends. Some of their responses were "they don't work because they don't want to", "do you know how many people just want a handout ." Really??? Well I will take my chances, for every person that falls into that catagory there are countless others who are thankful for that 1 gift their child has to open on Christmas morning or the food they will eat that day.

I like to believe that most people in this world are good, honest human beings. Maybe I am crazy, but I don't think so. Until someone can prove me wrong I will continue to believe in goodness and honesty, and I will also continue to be sad for those that don't love and compassion in their hearts. Merry Christmas and may God Bless All!!

[SNOOPY]

Maybe you mean to protect yourself from a perpetrator?

Jan

Jan, if you read the post by JanaK maybe you will understand my response.

[jifr]

Freedom1: Oh gosh no! Please please please don't feel like I was attacking you!

I'm so sorry if you felt like that!! (I feel sick now thinking that you felt like that!!!!)

Obviously, I did not put all of the other details that go along with the observation. In hind sight, I realize I should have! There were other things I observed, too, but didn't want to go into all the details!

So, for perspective...

Prior to her asking me if I had MS, I should have mentioned that they were talking about their "strategy". The man was telling her what she was supposed to say and they were practicing it.

(We all know that one of the struggles we as MSers have is that you can't SEE we have MS. I'm not sure how they were planning to defeat some of the neuro tests, though, but they were practicing what to tell the neuro. He would say, "What if he asks you this?" and she would give an answer and ask him if it was right. FWIW, I think she was nervous.)

I mentioned the thing about the nails only in reference to my own experience with people who have cheated the system. It was in no way intended as a reflection on anyone else! I got my nails done, too, for years after my diagnosis! (But then came that dexterity problem and I couldn't do buttons or zippers anymore).

If anyone else took offense - please accept my sincerest apologies! I had no idea it would be offensive to ask how we felt about people who want something for nothing. I thought there would be sympathy for our fellow MSers who are going through the real struggle of trying to break through the red tape to get their just benefits.

I'm sorry if I offended anyone.

:-/

[Imagine]

Thank you...

Thank you so much for thie post, Freedom. I agree with you 100% My daughter turned 14 this year. My husband and I gave her a spend the night party with 7 of her friends. Her party invitations stated, no gifts please; instead, bring a non perishable food item for the local food bank." Although it was my idea, she became very excited about it and she is seeing, first hand, what a difference 1 person can make- b/c the idea has caught on. My daughter knows that her actions began a chain reaction, which resulted in feeding multiple families.

No sweetie, you're not crazy. You're kind and compassionate. Hey, there but for the grace of God... Thanks for sharing. God Bless. Love & Light to all...
Shalom,
Suzanne[QUOTE=freedom1;1337930]When I first read this I knew I had to reply but didn't know how. I was angry because I felt that this person was attacking me for getting my nails and hair done. As I reread it I realized I was sad more than angry because people have become so callous and there is so much hate and anger at our neighbors. I feel sorry for anyone that carries so much hate in their hearts.

[freedom1]

JIFR,

I was not referring to you as attacking me it was another post right after my original. I am sorry that you felt that way.

However I still believe never to judge a book by its cover, and with a little more kindness and compassion this would be a better world. Until you walk in another person's shoes you have no idea what has led to them to a specific point in their life. This person may have been laughed out of doctor's office on prior occassions, through no fault of her own. Maybe she wasn't sure how to answer the doctor's questions, maybe she suffers from cog fog and can't remember. There are countless reasons to rehearse answers without them being suspect.

The poor and working poor have had every safetynet pulled out from under them, many of them no longer trust or believe. This is now extending to the middle class. I know that my cast offs are someone elses "Sunday Best" and good for them. I hope they enjoy them as much as I did.

When people judge others it just rubs me the wrong way. As I said in an earlier post, I have been on the receiving end it doesn't feel good.

[Jules A]

[SIZE=4][*]How did this thread go from a woman in a doctor's waiting room to carrying tire irons in parking lots? And you folks wonder why threads get closed...[/LIST]

Seems to me we did a perfectly fine job of working through it on our own. I'd like to see this be allowed to happen more often. It builds our coping skills.

[valeriem2220]

I do know some people cheat the system and it does upset me.
I am a working single mother, now diagnosed with MS and miss work some days because of my symptoms. I do have to keep a close eye on how many days I miss because it all counts against me and can cause termination. I did tell my boss that if I feel being at work is dangerous for me, I work in a factory with machines everywhere, that I will go home and she agreed. Yet that doesn't change the fact that if I miss too many days I will be terminated.
I have already gotten a verbal warning for leaving work to often because of this. I cannot leave work again until February 2012 or I get a written warning...I just pray that I keep feeling well enough to be there.
YET even with all of this happening and 6 months of medical leave this year, I do not qualify for assistance of any kind.My ex is $45,000 behind on child support, so it is just me and now I am very very far behind on my bills.

Lately I look back to when I was 18 and at my first job in a bread store and we had a customer that would come in once a week. She would pull into the parking lot driving a brand new Cadillac, in the winter she had a full length fur coat, and had all of the name brand expensive clothing and makeup and hair was perfect and her nails were always done to perfection and the jewelry...oh my. Yet she paid with food stamps. I could never figure out how she did this.

[jayjee]

I agree with Jules. This was a great discussion all the way around. Our humanity is our greatist asset; we need to make it work-try it, make mistakes and get better at it.

[tkrik]

It is hard to see others taking advantage of the system. And, by their doing so, it makes it harder for those that need it.

It's hard to say what was really happening when you observed that couple in the neuros office. It could very well be that she IS ill and is undx. They could have read on the internet somewhere of things that will help her get the aid that she needs and thus, they were rehearsing. She could have memory issues too. Then again, you could be 100% correct in your observation.

I thought I would share this because we all "look so good." Before my official dx, I was unable to walk well and could no longer work. I'm a single mom of 2 and ended up with little income other than child support. I had to go in to our local welfare office and apply for aid. The office in my area is known for a lot of people addicted to drugs and such. That is their clientele. I went in there, signed in to meet with my case worker, and sat down to wait. I was casually dressed with my hair clean and styled, and was well groomed - but not over the top kind of groomed, just neat and clean. I did not fit in with the others in the office and comments were made as to why is she here. These comments did upset me. I didn't judge them other than some of them looked pretty shady. But I didn't question why they were there.

It was the opposite of what you observed, yet I was there because I needed help. The only sign that showed my need was my cane and that I had a terrible time walking to get in the the interview area. Like many of us MSers, I was judged by "looking so good."

I know this is a little different that what you observed but my point, as others have made, is that you can never tell a persons need on how they look or the little bits of information you get from them. I also think that if this girl was really looking for a hand-out, she may have questioned you in a way to get information to help support her "illness." Then again, I could be wrong. Of course, I am always one to give someone the benefit of the doubt.

Also, my neurologist's office is huge! There are lots of different kinds of patients from all walks of life. Some look the way you described this couple and some look perfectly healthy. Some look miserable and in pain, others look worried, and still others show signs of a condition but are happy. It never crossed my mind that any of them were looking for a hand out. What does cross my mind is how sorry I am that they are all there. Neurological conditions are no fun.

I think if one is to pick a disease to be considered disabled, a neurological one would not be a good one to pick. Quite honestly, IMO, fibromyalgia would be a much better choice and easier to "fake" than say MS. There is no faking a neurological condition.