“You’re Not Disabled, You Just Don’t Want to Work”

“You’re Not Disabled, You Just Don’t Want to Work”

Has anyone ever told you that? Or suggested that? Probably not even to your face but either way, it is so insulting isn’t it? The idea that we are only using multiple sclerosis (MS) as an excuse to not work because we are just lazy. Obviously there are people who have MS that can still work but there are also many people with MS who can’t because news flash, MS does not affect everyone the same! Just because you have a cousin who has a friend whose mom has MS and they can work does not mean we all can… To those of us living with MS or living with someone who has it, this is obvious, something that does not even require thought so when we hear people telling us stuff like this it comes off as asinine, unbelievable that someone could actually think in such a way! But people do and it is sad, sad that there are people living with MS, living a constant battle, who also have to deal with this criticism.

The father of the girl I was dating when I was first diagnosed with MS thought this way. He never said it to my face but when I was not around he openly expressed how he thought I just did not want to work but instead collect a government check and live a life of idle luxury. He obviously did not feel I was good enough for his daughter (not just because of that but also because of things like the fact that we had opposing political views) but that is not what angered me, what angered me was the idea that I just didn’t want to work, that I just wanted to laze around and that I saw MS as my ticket to do so. That was many years ago but it still angers me to this day! I think it’s the knowledge that there are people out there who feel this way, who think people with MS are just trying to scam the system. I hear similar stories all the time from friends with MS and that also angers me, seeing people I care about so upset over something someone said, over the idea that that person does not deserve Social Security because they are just being lazy.

So here is what I have to say to those people; I don’t know one person with MS collecting a Social Security check that deep down inside I think should be working a job instead. In fact, I don’t think I know anyone with MS on Social Security who does not wish they could still be working. We miss the days where we had jobs because when you lose the ability to work you lose a huge sense of independence. But MS is a neurodegenerative disease, an autoimmune disease that attacks the central nervous system (the brain, spinal cord and optic nerves) and I “think” that controls every bodily function required to work a job (or even simply be alive) like being able to walk, see, maintain your balance, not be in pain, be able to properly control your limbs or even think! So no, many of us actually can NOT work anymore. I whole heartedly believe there is not one person with MS who would not give up that monthly check to be able to feel “normal” again and by normal I mean not have to deal with the constant struggles, hardships and pain of this disease and instead be able to work even the most mundane of jobs!

When I really think about it the most logical explanation I can come up with for why there are so many “haters” out there is that they are simply ignorant of this disease; they really have no idea what MS actually is so instead they just believe what they see and to them most people with MS look 100% ok (because it does not turn us bright green) even though if you were to look at their MRIs you could tell that something is very wrong without any sort of medical degree. I also sometimes think that a lot of these people are unhappy with their jobs and financial lives and just wish they could just sit at home doing nothing while living off the government. They are the very kind of people they accuse us of being and are secretly jealous of what they think we have. Well here is the thing, no one with MS wants this life, it is not relaxing, we want what you (the haters) have so if you are OK with feeling like the world around you is constantly spinning, not being able to walk in a straight line, not being able to drive, constantly tripping over nothing and falling, feeling nauseous, being in pain, dealing with bladder issues, not being able to think clearly or remember anything, having to walk with a cane or use a wheelchair, not having the strength or energy to have fun with all the friends you grew up with along with all the other random hardships of MS, we will gladly trade you bodies so you can collect a Social Security check that is nowhere near enough money to actually live on and we will go get ourselves jobs and earn an actual living that would allow us to do the things we want to do instead of just most of what we have to do like order more pills or pay medical bills.

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Comments

View Comments (30)
  • sip1beer
    2 years ago

    My husband and I have been in the brewing business for 30 years. I was diagnosed with MS two years after we opened our microbrewery. When I would have an exacerbation, my stumbling and tripping was mistaken for my having had too much to drink! It was easier to laugh it off than explain my MS. After years of it not being so funny, I decided to make it my mission to educate people about my disease. I served on our regional National MS Society board for 16 years, volunteered for every NMSS event I could, became an advocate writing to local and national politicians and am now the leader of our local support group. But what about my day job? Somewhere in the middle of the brewing business, I was the only choice to take over an old family oil & gas company. So I switched from beer barrels to oil barrels. It was perfect, because I no longer had to do any physical work. My organizational skills brought together all the oil properties, revenues, and I ran the companies well. Then my MS went from R/R to Secondary Progressive. I needed a cane, then a walker and now a scooter. Along with losing my mobility, I was losing my cognitive abilities. My family finally had to turn my position over to another family member. So, now, I am no longer able to work, but I can still volunteer. For me, coming out about my MS and educating people about the disease was the best for me. I realize that at 67, I will never again be in the workforce, but that doesn’t mean I can’t do everything I can to improve the situation of others with MS.

  • Matt Allen G author
    2 years ago

    Here is my simple answer; you obviously worked your butt off for as long as you could! The fact that you are still trying to volunteer your time to help others says a lot too!

  • Carhylopez82
    2 years ago

    I enjoyed reading this and can relate. I’m recently unemployed and trying to get on SS.

  • DonnaFA moderator
    2 years ago

    Hi Carhylopez82, we’re glad that you enjoyed the article. I thought you might enjoy some of the articles we have regarding applying for and appealing SSD. We’re always here to share information or support.

    Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • Lori7607
    2 years ago

    Wow…great points. I am in the process of being diagnosed with ms. I started symptoms about 6 years ago, but really dragged my feet of going to the doctor until last year when I started to fall without explanation and really hurt myself. Anyway, I have been having serious memory issues and getting confused with things that I know how to do. My coworkers think I am loosing my mind, my boss asked if I was using drugs (I work in the field) and I get lost driving when I am in familiar places. I have had co workers ask if y husband is abusing me, when I come in with another injury from a stupid fall. I totally understand why people think I am using drugs, going crazy, dealing with domestic violence, they don’t know about the lesions on my spinal cord and brain. My boss told me he thinks I am manipulating everyone. So what are we supposed to do? Go from job to job, getting fired for not being able to perform our duties? No, we are forced to live the rest of our miserable lives in poverty. Contrary to the popular belief, you cant live on social security, you merely survive. Add two young kids to the equation, and things get worse. I am barely holding on to my job of 15 years, and my day is rapidly approaching. I am afraid of hitting someone when I hear that I am mooching off the government,and I have no doubt that I will hear it. MS sucks.

  • Matt Allen G author
    2 years ago

    That is why I always went the full disclosure route with my jobs, it was much easier to just say “It’s MS” then try to explain how it is not any whacky theory. But “survive” is pretty generous in my opinion haha

  • Mark
    2 years ago

    Thanks Matt!
    I get this all the time, maybe not to my face but in the “look”, rude comments not meant to be overheard.
    I’m a little over 6′ tall, have tattoos, shaved head drive a truck (4 speed so when I am no longer to shift my daughters can take my driving privilages away) and have a doberman.
    I don’t look sick, I limp a little on good days but ….
    I would trade my SSID checks and my MS for the ability to go to work. You can have my handicap plates and park where you want, all I want is to be able to put 8 consecutive hours together being able to do anything. You can go through all the mounds of paperwork to qualify for help on medications, all I want is a night out to enjoy myself and my family.
    You can sit on hold with insurance companies, Doctors, pharmacies etc, all I want is to be able to go someplace crowded with noise, people, activities and not be overwhelmed by it all so much you look for any available exit to get out.
    So I guess those of you who jump to the conclusion that I don’t want to work, You want to Trade me Places?
    I really doubt it, but you know what
    I look really good, I must not be sick, I’m just lazy living off your tax dollars.

  • Matt Allen G author
    2 years ago

    A night out to enjoy yourself? PFT! I would LOVE to just be able to work a crappy job that lets me complain about NORMAL stuff, stuff that everyone else complains about! Crappy hours and a horrible boss, THAT would be awesome compared to MY normal. I would GLADLY trade all the “perks” of having MS for those “hardships”!

  • itasara
    2 years ago

    I have to admit that I know I have a Lazy side to me. I always have. I’m more a procrastinator, maybe, than lazy. So I admit this and can’t blame anything on my MS which I had no idea I had until I was 57 years old. Yes, people say I look terrific, but I do try to put in some education info about MS if apropos. I didn’t know all that much about MS until I was diagnosed, so it isn’t surpising that most do not understand what this is all about. Before that I had not worked much at all. I wanted to bring up my family in a more traditional way, mom at home, which as you know gets a lot of criticism these days. So I am fortunate to have a spouse whose income doesn’t require me to work. I wanted to work when I first finsihed nursing school, and I did for 3 years, but I have to say I never fit into the working world. I’m too much of an out of the box individual in many ways. I do have a part time job now as a cantorial soloist, which I probably should have gone into years a go, but didn’t push myself to do so. I have been doing this for 16 years about and believe me it doesn’t pay all that much, but I’m not in it for the money. I don’t know how much longer I’ll do this.. I am 68 now.. singing is a lot more work now, but as long as I can sing, I’ll probably be involved one way or another with singing and music. I still have to push myself to practice or to get out or get up in the morning if I have to and I do have moments of fatigue, but otherwise I am doing well. I know that not being able to work or do activities one wants to do is a big issue especially when MS or another disease is involved. I probably had MS most of my life but had no idea and maybe that is one reason I was not more agressive, but then maybe it was just who I was.

  • Matt Allen G author
    2 years ago

    I can see it working like that either way (“Lazy because of MS or “just who you are”) – For me? I was a procrastinator but not because I was lazing around, it was more because there was just so much else I was always trying to do, plus, I worked better under pressure haha… good times…

  • Catgirl66
    2 years ago

    What makes you so sure that people HAVEN’T said this to my face or to the face of other MSers for that matter? What’s really funny is that I have ADHD, too, and the same idiots– er, PEOPLE– who were constantly annoyed by my nonstop go-go-go happen to be the same ones who think I’ve just gotten lazy now that I can’t work. Great post

  • Matt Allen G author
    2 years ago

    Oh no, I KNOW they have, someone said it to a friend of mine which is what made me think to write this. I was just saying that no one has said it to MY face 😀

  • JulesPMH
    2 years ago

    My husband was diagnosed with MS in 2011 – 4 years after his symptoms first occurred. He just stopped working this April, more than a year after surviving a round of chemo for hairy cell leukemia, and all of this after only 2.5 years of being a licensed teacher- which took 17 years to accomplish. He was heartbroken. But he could not longer keep up with his work;the stress of it was making his flare-up more and more frequent, not to mention severe…and of course, he would have good days, but he would also have bad days…and don’t he was becoming less and less able to cope.
    All of this has a huge impact on the immune system – and with a disease like MS, well…to add some imagery, you might as well be giving the disease a great big bowl of Wheaties every morning you step out the door…
    Add to that the fact that the heath care system is NOT set up to work around your work schedule when you have a serious and/or chronic illness. The best doctors have huge patient loads (because they’re the best), they have to see patients in office, do hospital rounds, and often get called in to emergencies, then you have to figure in diagnostic testing, therapies, specialists, infusions…how do you fit this in around a work schedule, so that you can manage your disease and try to stay healthy enough to work?
    The answer is, you can’t. You get to choose. Work and be sick until you run yourself into the ground and are probably much worse off than you would have been…or you “give up” and make the choice that is so painful for so many people who are in the prime of their lives and often the careers that they love and have worked so hard to build…and for what? To sink into the near poverty of SSI?
    “Must be nice…”
    Yeah…dream come true…
    We should reboot “Trading Places” with disability instead of race as the underlying theme…

  • MSFighter
    2 years ago

    Perfectly said!!! I wish I could go back to my job that I had for 10 years. Everyone there was like a second family to me. It was so depressing having to leave. Call me lazy all you want, you have NO CLUE what I must deal with on a daily basis, no matter how “good” I look. No one is that important to have to explain yourself to!!!

  • Matt Allen G author
    2 years ago

    “Looking this good” is a full time job, haha seriously, staying healthy-ish is NOT easy WORK!

  • Sidney
    2 years ago

    I don’t have MS, I have Ehlers-Danlos Syndrome, which apparently has a high proportion of patients who also have MS. I haven’t been tested for MS, but I have some of the same cognitive problems random pain, etc that you guys with MS have too. This site helps me feel like I’m not alone.

    Anyway, this article could actually be written about EDS as well as MS. I keep getting denied disability over and over again because like MS, some people with EDS *can* work, but not all.

    You’ve definitely hit the nail on the head about what those of us with EDS seem to go through too. In fact, I’ve had more than one instance this year of me sitting in handicapped seats and having other people tell me “these are handicapped seats, you can’t sit here!”, and having to show them proof of me being allowed to sit there.

    I don’t know. It just sucks because people don’t realize that not all disabilities are visible, even other disabled people! It hurts to have your life questioned. I’m certain these same people would not feel happy if they were questioned about their disability. And just because one’s disability is rare or hard to see on the outside, does not mean they are making it up.

    I’ve had people accuse me of making up EDS or at least pretending to have it to get heavy-duty meds. Meds that don’t always help or work on really bad days.

    Thank you for this article.

  • Matt Allen G author
    2 years ago

    I think MANY diseases and disabilities can relate perfectly to this because it’s a huge problem all around. I have been told “you are too young for MS, you are lying” and “men don’t get MS, you are lying” which just tells me “wow, you know NOTHING about MS” but like you were saying, people have no idea what we go through every day, they believe what they see which is never even half the picture…

  • LuvMyDog
    2 years ago

    After working for over 30 years, I had to stop working because there were too many days that I was dizzy, I walked into the door jambs, my vision was blurry, sharp pains in my head were debilitating and days with mind numbing fatigue.
    I KNOW there were people who felt I just didn’t want to continue to work. Do I care? Not one dammmmn bit!

    Healthy people can’t possibly know what it’s like to suffer with an MS flare-up or to walk like you’re drunk, when you’re not a drinker or to feel strong and robust one day and weak as a kitten the next.

    I always say…somewhere along the line, somebody’s going to have painful arthritis or a fracture or a painful surgery or even something as common as a bad case of the flu.
    When that happens…I make it a point to say something like…Oh,it can’t be that bad..stop complaining.
    Give them a taste of their own medicine!!

  • Matt Allen G author
    2 years ago

    Yeah, I had to stop caring what people think a while ago, it’s too stressful and their opinion does not affect my life. Haha but yeah, one minute an autoimmune disease that affects the CNS is nothing and you are just being a baby and the next minute the flu is the end of the world!

  • Brian
    2 years ago

    I tell everyone. That tells me I don’t look that bad that they are only seeing what I want them to see. If they want to see how bad it is come see me at my house when I am not putting up a public front that looks like he can make it through the day. Also if you want to meet make it early in the day so I will be sharper and better able to make it around. I also tell them that if some of can cure it I would gladly work I want to work.

  • Matt Allen G author
    2 years ago

    Yes, I put up a VERY good front, I never complain or when I do I try to underplay it because I am not looking for pity. But the problem is, people don’t really get how I REALLY feel. I am also and early….er bird. I can’t function well past 5pm, noon is when what little energy I have start to taper off so this “let’s do dinner” thing? No, breakfast/coffee…

  • Brian
    2 years ago

    That and I would like to be able to sit on a chair with out feeling like I am going to fall of, tip to the side. or when people tell me to sit down I would like to know that I will be able to stand up and walk afterwards.

  • AllisonJo
    2 years ago

    Okay, Matt…

    THIS. This thing you wrote should go viral. It should be read by everyone, that is struggling with MS, or really any illness. It should be read by their families, their employers, their doctors and therapists. And it should be printed out, memorized and thumtacked to every cubicle of every worker at Social Security. We don’t want this. We are not “working the system” We miss our jobs with an ache that hits us every day, not only the sense of purpose but the people, the lunch hours and happy hours. Our jobs are who we are in so many ways and without them, we are just less interesting….I now step away from many conversations because I just don’t have much to add.

    Thank you for putting into words exactly how it feels.

    Allison

  • Matt Allen G author
    2 years ago

    Wow, that is, well, the word escapes me, but thank you, I am very happy to hear you found this to be “go viral worthy” (again, can’t think well today, can’t find the right word)

  • Nancy1012
    2 years ago

    I struggle with this aspect of my life everyday.

    I am 51 and newly Dx. I have 27 years into my public school teaching job. As with many teachers I am slowly burning out, and my husband and I made the decision a few years ago that I would retire early, lose a chunk of my retirement ( btw-contrary to popular belief-teachers in my state do NOT collect social security unless they have worked a side job to earn thier quarters), and then work a partime time job until my husband chooses not to work any more. The state I live in is VERY expensive regardless, and the plan was to move to a more tax, expense friendly state.
    Now I have MS.
    My teaching job is extremely physically and emotionally demanding. That was why I was retiring early. Now I am afraid that I won’t be able to complete even the next 4 yrs. if I need to go on disability I won’t be able to work a part time job to supplement the even greater loss of income.
    My solution is to just not even try to put into my job what I had before. To take more days off when I need to, to ask for more help from staff and students, to decline taking on the extra tasks the admin. expects. To, in essence , not be the teacher I was.
    Every day I am told”you got this” Wow, you have a great attitude” when in reality, I feel about to fall over.
    It’s because I have to.

  • Nancy1012
    2 years ago

    Thanks all,
    I do have a disablitity clause in my retirement. It would pay about 50% of my retirement and would allow me to continue to earn years of service up to 30 years, at which point I could collect 60%.
    Right now the plan was to work 31-1/2 yrs, then retire at 64%. Since I am starting my 28th year next week, I think I will just have to play it out.
    I will however look into the “ticket to work” program.
    Best wishes to everyone!

  • Matt Allen G author
    2 years ago

    you touched on a good point that drives me nuts. SSI or even SSDI is not enough to actually LIVE on but you’re not really able to work a part time job on the side to balance out your income because then “you are not disabled because you can clearly work a job”. There IS the ticket to work program (or something like that) but I don’t know enough about it, I would look into it in your case.

  • DonnaFA moderator
    2 years ago

    Hi Nancy1012. We’re happy to have you here. Please know that you are not alone. There is a lot of wisdom in the community, and many friendly ears. We’re always here to provide information, support, or just to listen.

    You may be interested in 5 Pieces of Advice for the Newly Diagnosed, Advice for Newly Diagnosed from Someone Who Cares and finally, A Few Thoughts for the Newly Diagnosed, some of the important takeaways: you’re not alone and be gentle with yourself. -All Best, Donna (MultipleSclerosis.net team)

  • Exiler
    2 years ago

    Well I just emailed this article to all of the haters (family and ex-friends) that I know.
    People can be so cruel to one other.

  • Matt Allen G author
    2 years ago

    Haha HOPEFULLY it sways them in the right direction because yes, people CAN be so cruel…

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