An Observation in the Neuro waiting room...

[jifr]

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.

The woman looked at me and asked me if I had MS. I said yes and her eyes got big.

She told me that she was waiting to see the neuro to see if she had MS...SPECIFICALLY so she could get on SSDI.

I paused. She wanted an MS diagnosis specifically so she could get on SSDI?!

I looked at her and didn't say anything else. I was furious.

I know there are people who go out of their way to take advantage of SSDI and it is just sickening to me to see and read about people who go out of their way to manipulate the "system" so they can get on SSDI.

I visit another MS board where a young woman has successfully received SSDI benefits. Yet, she posts about all the things she is doing. Going out with friends, getting drunk, she posts pictures of her getting her nails done, wondering about what she is going to get into tomorrow...

I'm disheartened and disappointed when I come across people who just want to take advantage of the system. That means there is less for the people who really need it.

Does anyone else run across people like this? How do you feel about it?

[Sequoia]

Does anyone else run across people like this? How do you feel about it?

It's possible for people to behave badly (according to our standards) and genuinely need disability benefits or other forms of assistance.

I give everyone the benefit of the doubt, regardless of how things appear.

[Tawanda]

I can't imagine anyone who would prefer having M.S. and SSDI than to NOT have M.S. and earn a living. I am guessing this lady does not have M.S. and is that the M.R.I. will turn out negative. M.S. is a very clear-cut diagnosis these days so if she is just looking for some nebulous disease to use as an excuse to get "free money". The sad thing is, she will probably spend all her time and energy looking for doctors to give her a reason to be unfit for work. The other thing that concerns me here is that she may really have M.S. and is being pressured by the man who was with her to go after SSDI. After all, many M.S.ers continue to work if they are fit to do so. Sad, sad, sad. This scenario explains exactly why you have to go through so many hoops to get SSDI. This is a sad tale on so many levels.

[onlyairfare]

Like many other MSers, I go out with friends, I work full-time, I travel, I get my nails done. I'm not on SSDI nor am I trying to get it, but I hope if I ever need SSDI, I can still get my nails done and go out with friends even if I can't work full-time. Never have been a drinker, so I won't be getting drunk!

I have a lot of invisible symptoms so I get the line "I look so good," which some of us know so well. So like Sequoia I give people the benefit of the doubt. People can behave badly and be disabled, and people can have significant disabilities but look healthy. Fortunately as Tawanda points out, there are very specific criteria for diagnosing MS, so this poseur hopefully will not get benefits she doesn't deserve based on MS that she doesn't have. The dollars should be reserved for those who really need them.

[cosake]

I try to give the benefit of the doubt as well, but it does make me angry to know people using SSDI who don't really need it.

This makes me think of a letter in the paper a few months ago. A woman wrote in complaining of a young man "illegally" using a handicap placard -- and not giving the benefit of the doubt.

The reasons she gave were: 1) The man was very young, 2) the man was healthy (looking, I guess because she didn't speak to him and ask him), 3) he had a young friend with him, 4) he was driving a (gasp!) sportscar, 5) he was buying beer.

I was so upset. Do you really think a young man is going to "steal" or borrow a handicap placard for his sports car just so he can go buy beer ?

And, do you really think that everyone who is handicapped can't drink beer or drive a sportscar ?!

Sorry, I know this is off-topic but this reminded me of it.

I have to say that now that I have an MS diagnosis and know how good I look (according to everyone else) and how I feel inside, I give way more people the benefit of the doubt these days.

[valeriem2220]

Oh My.
I do have MS, I work full time, I go out with friends, I do not have my nails done as we can't even wear polish at work so why bother.
I have had a few people get excited for me when I told them I have MS because they say I should look into SSDI right away and then I can stop working. I think, why would I WANT to stop working?

OK my place of employment is NOT the best run company in the world at all. It is very stressful, management treats us all like dogs, my boss is a horrible boss, some of the people I work with I feel are a waste of oxygen, I am on my feet on a concrete floor most of my 12 hour night shift, the work is hard and fast paced with a lot of heavy lifting. I go home every morning in severe pain from work and it takes me days to start to recover, then it is time to go back. I am always in pain from my job.

BUT I have a job and I don't want to stop working just yet. I do want a job somewhere else, yes, but I don't want to stop working completely.

I do admit some days when I am trying to get to my house from my vehicle and having a hard time because my legs are stiff and painful, or my back hurts, or I'm exhausted either because I had a busy night or just because of the fact that I work nights...I do think about SSDI.

When I make stupid errors on paperwork or have to stop and think about how to do my job at least once a night or simply wonder on my way to work "This IS a night I have to work, right?" because of my memory and cog fog and it scares me that I feel like I am just winging it at work every night...I do think of SSDI
When I have to leave my daughter to go to work and she won't let go of me because she would rather I stay at home with her....I do think of SSDI.
Then I start to think of someday HAVING to go on SSDI because I just have no choice...and it scares me to death.

I am glad I can continue to work for now...even though I am miserable doing it because of the pain and in fear every night that they are going to figure out that I really just can't do my job as well as I used to because of my cog issues...I am still working and I will not give that up easily.

[Hawkgirl]

From what she said, it *sounds* like she is looking for some way to get a free ride. But we don't know her story. Does she have symptoms that lead her to thinking she has MS? Is she physically unable to work and hoping she can get some sort of diagnosis to make getting SSDI possible?

I wholeheartedly agree there are people who take advantage of the system. And those people are despicable. I once heard a man chuckling about his workman's comp and how he is collecting even after he's recovered. I find that despicable. There are certainly people who work the system.

I often feel conflicted myself about being on SSDI. When we hear stories about people who are paraplegic or blind but still work or volunteer, I feel like a heel. Then I have a bad day and remember how I got to this place in my life.

It's similar to when you use a handicap parking placard, but you are able to walk and haul your stroller or groceries in and out of your trunk. And you get those assessing or hostile looks. They don't know my story. (And the funny thing is, if I had grey hair or if I were massively overweight, no one would blink an eye. My bad luck that I'm a red-head and my version of "grey hair" is just lighter red.)

So my response to the OP regarding how do I feel about people who are gaming the system, is that I despise them. But how do I feel about a woman who hopes she has MS so she can get on SSDI, is that I don't know her story. She may be debilitated but can't get a diagnosis and therefore can't get any assistance.

In some ways the system is broken. Some people can game the system, while others fall through the cracks and can't get the help they need.

[muse_7]

I am also of the benfit of the doubt mindset. I have PPMS and most of the time do not leave the house. I also needed a diagnosis to file for SSDI because I cannot work.

But I'm sure that the few people that have seen my out think I can't possibly be as sick as I say I am. I have even had a neuro tell me in one sentence you have PPMS and then in the next but you are fine, it could be benign and you can still walk. What? He saw me for 5 minutes sitting on an examination table and that was pretty much all I did that day.

I am not old, not overweight, reasonably attractive and don't have sick tattooed on my forehead. If you look close you will see I stagger because my left leg has drop foot and my rear is almost flat because of lost muscle. But other than that there is nothing outwardly that would tell you I have PPMS. Most of my struggles can't be seen because they are internal and I am not going to leave my house to let you see me when I am bad.

One thing MS has taught me is kindness to others. I think that makeup and possessions hide a lot of misery. Whether it is illness, financial problems, depression or relationship troubles. We don't know what is going on with anyone unless they choose to share it. And even then we don't undestand it because it isn't happening to us. I don't know what homelessness feels like and I don't want anyone else to know what MS feels like. And I try not to judge.

I believe in karma. And I don't think that being on SSDI is the good life.

I wish each of you peace, love and light.

Debby

[Scooter24]

I am on disability , I also go out with freinds, go shopping, and even still play some golf but no longer get my nails done, I am not able to stand anymore than 10 min or more, I'm not able to walk more than 50-75 ft without a walker. I also have bad brain fog which comes and goes, I am not able to sit for any length of time as I stiffen up and have trouble walking and get bad aches in my legs, and have bad vertigo. Since I have been in the mechanical field most of my life I am no longer able to do that do to limited mobility. I'm not able to work most retail as they require standing and walking, I worked a desk job for 2 yrs before my dx and was constantly getting in trouble for being away from my desk when I had to get up and move around to get rid of the pain in my legs.

But you ask how can I play golf then? well I do ride a cart and have a special flag for it indicating I'm handicapped which allows me to drive basically anywhere I need to reducing the amount of walking to an minimum. Both of my Nueros have noted in my records that it is some of the best physical therapy possible and have told me to play as much as I can. But at the same time they must have felt I couldn't work anymore also as I was approved for SSDI in less than 3 months based on documentation they supplied to SS.

It just amazes me the number of people that get upset when people say to them "but you look so good" yet as soon as someone trying to SSDI doesn't look sick than they are trying to rip off the system. We need to find a happy medium here some place. I understand what you are saying but could this woman look like that because she hasn't been able to work and has been fighting to get a dx so she can put in for SSDI.

[Jules A]

The woman looked like she was on withdrawl from a drug and the man looked like he was of the "not so good" kind.

Although I am totally against abusing the system I try not to judge based on outer appearances because although you might be right on I would also consider that maybe:

1. she is a victim of domestic violence
2. she has anxiety and is afraid of physicians and medical treatments

or even that

3. she has to pee, which makes me jiggle and I'm sure look rather squirrely

I work with people suffering from poverty in the inner city and that "not so good" kind of look might just be that they are homeless and aren't able to dress nicely and perform hygiene as easily as I can.

I try not to judge those that have less than I do no matter how they went about getting what little they have.

[jumpinjiminy]

That drugged out look could be pure exhaustion. I'm sure I've looked that way on plenty of occasions without any drugs. Perhaps she's not been sleeping well? Maybe she's hanging in there working as long as she can but just can't take it anymore and it's showing?

I try not to judge either. Funny thing, there were many people I met in my younger days I would have sworn were druggies only to find out it was the farthest thing from the truth. It taught me a thing or two about basing opinions on appearances.

When leaving the MS center last year, there was a woman leaving right before me that had that drugged out look. Had she been anywhere else without the scooter, I'm sure plenty of folks would have come to the same conclusion. I felt so bad for her. It looked like she had to drag herself out of bed without time or energy for a comb and toothbrush before getting her infusion.

Maybe she does have MS and maybe she needs SSDI. The surprised look in her eyes may have given this one away.

[freedom1]

I too am on disability, I continue to get my nails done, I have my hair colored too. Whenever I leave my house I put my makeup on, fix my hair and "dress up". People tell me all of the time I look great. Sometimes I say thank you, sometimes it hurts like **** because it is not how I feel. I know many people wonder why I am on disabilty because of the way I look. I am not playing the system, I take some pride in how I look on days I can go out.

Leaving my dream job was not a choice, I can no longer walk more than 50 feet, I can't stand for more than a few minutes, I also can't sit for long because of the stiffness, I am legally blind in one eye and live with pain everyday of my life. I received LTD before my STD ran out and SSDI within 3 months on the first try.

On the days when people see me I look like the picture of health as long as I can sit/stand as needed and I don't need to walk.

It's the days they don't see me that they have the right to judge.

I know I am being judged by some people but I try not to do the same, until I walk in that other person's shoes I have no right.

[JanaK]

I have never had my nails done. Ever. Hair? Sometimes... I have, however, ALWAYS worked. Since I was 15, I have worked and, prior to that, I was a babysitter and summer car-washer and delivered newspapers after school. I was Dx'd in 2001 while working for an airline (read: 9/11/01) and keeping your job was nearly impossible even with perfect health. I've paid a lot of my hourly earnings (and, in lucky years, parts of my salary) toward SS and I am a tax payer. Most of us are but, I actually have written checks to the IRS- not just had my money sucked out on payday.

It's not easy to get disability for anything. I'm still working- barely. I make a ridiculously low sum of money. It's so low it's less than what disability will pay. I keep working because that low sum is better than the nothing I will receive waiting forever for my benefits to start paying. Anyway, I really like getting out and forming personal relationships and doing a job that makes a difference.

People who scam the system are only getting away with being scum. Scum people usually screw up in life on many levels, so they won't be collecting for very long. Trust that. If your trust is wavering, step up closer to them and take a whiff. Scum/Scam people usually carry a stench. Seriously. If "stinky" were a determination in SSDI, those of us who bathe regularly would be SOL. (Again, I'm talking about the scammers and not the general applicant.)

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.

People who take advantage of us get away with what they do because they count on us to be civilized when they are anything but. Be civilized, but carry a big (tire iron) stick.

[SNOOPY]

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.

Really??

Show them that your arms function rather well and that they, too, can earn a placard.

And you can spend time in jail for assualt.

I have been doing HC parking for 26 years, starting at the age of 24. I have had my fair share of comments, dirty looks, threatened with the police and yelled at, all because I "look too good" to park in HC. Tire iron? No.

Carry a tire iron and threaten people? Seems rather extreme...imo.

[mjan]

Really??



And you can spend time in jail for assualt.

I have been doing HC parking for 26 years, starting at the age of 24. I have had my fair share of comments, dirty looks, threatened with the police and yelled at, all because I "look too good" to park in HC. Tire iron? No.

Carry a tire iron and threaten people? Seems rather extreme...imo.

Maybe you mean to protect yourself from a perpetrator?

Jan