Paying People To Stay Home

 

We don’t appear sick enough and I hear many complain about paying people to stay home.  That $1037.00 I receive in disability benefits has been a dream of mine since I was 15, when I got my first paycheck from Taco Bell and saw my deduction for Medicare and disability benefits.  Yes, this girl from Westminster, California is finally living the dream. 

 Imagine having nothing to do but go to frequent doctors appointments.  Those routine invasive procedures – I LOVE having a camera shoved down my throat annually and on March 2nd I finally got implants.  Yes, I have a port implanted above my right breast with a tube that goes into a vein that goes directly to my heart.  It’s done wonders for my cleavage.  Now when I get my blood drawn, instead of four or five sticks with an exploratory needle, it’s like girls gone wild.  I just pull back my shirt and BAM; I’ve got an IV in seconds.  When I received my first chemo infusion with it, had the oncology floor been a bar and port o-caths were drinks, I would’ve bought a round for everyone.  Imagine being able to use the restroom without having my IV in the vein on the back of my wiping hand.  HEAVEN!

 Many people with Scleroderma, Lupus and other autoimmune diseases have trouble getting disability benefits.  That disability usually is a gigantic pay cut after years of hard work.   Part of it is our inability to say no.  Yes, some of us are work sluts.  Yes, we can work a full 8 to 10 hour day, but what happens at the end of the day?  Let’s see….we pick up the kids from daycare, help them with their home work and feed and bathe them.  It doesn’t sound like much, but when your feet are so swollen that you can’t walk and stay on your feet despite the pain, it takes a toll on your health and psyche.  Swelling, possibly caused by our hearts working too hard to move faster that our bodies are capable, prevents us from moving from point A to point B.  An immune system already compromised by chemo to keep us alive makes us more susceptible to the germs our kids bring home with them.  My pulmonologist refers to my 7 year old as a cesspool for a reason.  We bathe our little nose miners to wash off the day’s accumulation of God knows what.

 We don’t do all of these things and more because we like to complain.  We do these things because we want to live a full life.  With or without children, as caregivers, lovers, grandparents, aunts, uncles and friends, we battle each and every day and some end up working ourselves into an early grave.  Should we dare be so bold as to request benefits we have paid into for decades so that we may remain on this planet just a little longer?  I know, now I sound like a nut.  But what’s so nuts about putting our families and lives first and not our livelihoods?  A job is important, but it should be last on our list of priorities, not first.  I’m not saying we all need to be slackers, I’m saying this “walk it off-shake it out-cowboy-up-and-deal-with-it” way of life is going to kill most of us before our time. 

 Kudos to those who can maintain their health and work.  I envy you.  Had I followed my intended career path, I would be a registered nurse, probably with a surgical specialty.  But not everyone gets what they want, that’s life.  It would be a dream if I could keep a job without having to take time off for flare ups or unexpected ER visits.  And honestly, that puts a larger burden on co-workers.

 I don’t say these things lightly.  I almost worked myself to death and I am grateful I was finally able to say no to my Social Security interviewer when she asked, “Can you work a full day?”  When asked that, it is almost reflexive to say yes without considering what happens before and after work.  A full day is from the time you get up in the morning, until you go to bed. 

 I hear constant criticism from even close family members that we shouldn’t, “Pay people to stay home.”  Good news everyone, you don’t.  Those who have been working have been paying into a system for years, so that burden is not yours.  And for those who have never worked and are using SS or disability benefits, I say, kudos.  They are taking care of themselves so they may take care of their own families.  People who take care of themselves can take care of their children or elderly parents and are doing society as a whole a great service. 

 Now, with every program, there is always room for abuse.  People who take advantage of the system are a minority.  So just get over it PLEASE!  It’s just a fact of life like sand in your PB&J at the beach.  It’s like avoiding the beach because you don’t want to get sand in your lunch.  Then one can say, “Just don’t eat at the beach”, but you are still going to get sand in your shoes. 

 So, I think I’ve covered everything. So those of you worrying about us free-loaders, you are off the hook.  You are not paying anyone to stay home.  Please, you don’t need to thank me for that good night’s sleep you will get tonight. 

 Here is one way to look at it; when on an airplane and experiencing a drop of pressure, you put the mask on yourself first, then the person who needs help next to you.  And if you need that metaphor explained, file that away so that when you are diagnosed with something and have trouble working, you will get it. 

 

Article written by staff writer, Karen Vasquez

Karen Vasquez is a mom of a 6 year old son, writer, blogger and patient. Symptoms of tingling and blue fingers baffled Navy doctors in 1992. She was diagnosed with Scleroderma at age 23 in 1994. Then in 2007 she was diagnosed with Sarcoidosis. Karen has had her share of medical “adventures” and tries to find the humor in them wherever she can. http://sclerodermasarcoidosisandboxwine.blogspot.com

©2024butyoudontlooksick.com
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  • sadana

    I just applied for ssdi, anorexia ocd fear of food germs everything severe anxiety a lifr time of depression and mood disorder. Not sure if i will get it

  • Davidwalton12

    my 5 year old son has localised sceloderma is he entiteld to dla

  • I know where you’re coming from, Karen… I’ve dealt with scleroderma since I was a child and it has been a constant struggle.

  • kristi hansen

    Thank you for posting such a wonderful article. I am in the processing of my dissability claim. Next wk i go see the dr for a Mental Exam. I have Fibromyalgia and take a laundry list of meds for it that leave me in a fog. I once had a really good memory, but now i have to write down EVERYTHING. The report my Dr. sent in said i was able to work 20-39 hrs a wk. I volunteer at church one Sunday a mth for about 3 hrs and that puts me in bed for the rest of the day. The Church job isn’t that difficult, but there is alot of walking and standing during that time. As much as i have told my dr how much pain i am in, how can he state that i’m able to work up to full time? Just taking care of my family everyday causes me to nap every afternoon. I have worked all of my adult life, would rather continue working, but can’t. I paid in that money, and now i need it back. Oh ya! The gov’t has used that money and really doesn’t have it to pay out. hmmm… I sure would like to be able to pay my bills, today just being able to buy a roll of toilet paper is my goal. Not gonna happen…

  • Lisa

    I just hired an attorney to fight my first denial. I don’t have the strength to fight them by myself. I just hope that this (highly recommended) attorney wins! I lost my job of four years in November because of the disease I have. I was there for four years. I would HAVE to use them as a reference. No one is going to hire me after they find out that I was terminated because of all the time I constantly have to take off. Good luck to any and all other people applying for benefits!

  • Maria D.

    I have Lupus, had it for over 20 years. Worked despite numerous hospitalizations. I had long bouts of remission, but when lupus flared it flared. The last two flares have left me severely weak. I have a walker and PT and OT every day. Until a few weeks ago I was working every single day as a manager. Unfortunately I have no guarantee that I can do that type of work or to what point I will improve. This is the second time lupus has attacked my right side to the point of being barely able to move. Last time it took 3-4 months to get it back, this time my doctor’s are not so sure the mobility will come all the way back. I have a slight heart condition due to lupus, horrible stomach issues due to years on medications. I weigh normally about 105 lbs and now I have lost 10 lbs in 2 weeks. I have 3 children 1 just graduated college, 1 in college and 1 still in high school. My doctor approved me for the Ride, the handicap plaque card, I am sure if I need to go on disability this will be more of a nightmare than having lupus. You would think after 20 years and 21 hospitalizations it wouldn’t be that way but I know because I decided to work at a high level position I will pay the price of being denied disability. I don’t want disability, but I honestly can’t even wash my face without taking a nap after. I can’t imagine actually going to work and doing anything useful. This time I have no energy at all, usually I always felt some energy this time it really hit me hard, plus I am older now and I think my body is wearing out from the constant fight with this chronic illness. I love your article, it is so true. I’ve been a workaholic for so long and despite all the medical reports etc. I worked too long and hard to be considered disabled even though now I need a walker just to walk across the floor.

    Best of luck to you and I hope your health improves. I hope everyone who posted has atleast one good day a weak, and will not matter what take even 5 minutes to do something for yourself.

  • Joan Graves

    Bravo! Thanks for having the guts to fling truth upon all those who can’t handle it.

  • Barbara

    Thank you so much for your article; I really needed that support right now. I’ve been on partial disability for a couple of years, applying for permanent disability now (in Canada). I have colitis, an ileostomy, and severe inflammatory osteoarthritis, and I had to finally admit that I just can’t work anymore either. My hands hurt when I spend even part of the day typing. I can’t stand or sit for too long or I can barely move when I do change position. Just doing half of what a healthy person would do in a day leaves me exhausted and drained of energy. With an ileostomy, you have to live with the fact that your bag is going to fail from time to time, leaving you to clean up yourself when you feel so tired and in pain and defeated that you’re not sure you can. No, just looking at me, you could very easily say, “You don’t look sick,” but I would challenge anyone who was skeptical of my need for disability to live my life, or any one of our lives, for a day, and see how they manage.

  • Taryn Wardle

    I also have an illness you could not see, degenerative brain desiese, with in the space of two years i have gone from holding down a busy job and running a house hold with 2 teenagers, my husband was away working at that stage. to the point I am now, not allowed to drive, I have trouble thinking, i am forgetfull, I can not go for more than 3 or 4 hours without having a sleep the amount of drugs i am on is rediculousand, there is more but i can not remember of the top of my head…. I am not entitled to any benifits as my husband earns to much, but they do not take into account the cost at the chemist every month or the specialists or the tests……. life can be bloody hard at times, but you play the hand you are delt and life goes on taryn

  • Denise

    This website is a godsend! I worked since I was 14 (48 now), obtained my graduate and post-graduate degrees and was pursuing my career aspiration when I was cut down by MS. After working for 7 years after MS diagnosis I finally admitted to myself that I could not handle working anymore. I have been on disability for the last 3 1/2 years and unfortunately I have spent most of that time mired in guilt (because I look “fine”). I realize now that I have nothing to feel guilty about. Reading the posts on this site really make me feel validated and not alone. Thank you all!

  • Candice

    I agree Lady!! I High Five You as well.A lot of us are going threw this same Shi–T as other feel we don’t need to support our own Family while we are ill&can’t work a full time job,be a full time wife,a full time wife,keep our house clean&our live a normal life like some can Thank God For Them Right!! I am a 2nd time single Mother,Grandmother,who is trying to get on Disability.I have had Gi,Ra,Fibro,as well as a eye that I had to have a cornea replaced after being turned down&blind for over a year.I worked like that till I was seven months along with my last child.So Hell yes agree with Ya on all that you shared.God Bless you Lady!!

    Candice from Wheat Ridge Co

  • Sari

    Kat, what you said about the government paying you to stay 15– I feel like you’re reading my mind. In my more depressed moments I’ve often lamented being left behind while my friends have gone on to finish college, move out, find jobs and careers, get married and have children. It’s not that I don’t want them to have these things; I just wish I could too. But my illnesses and hospitalizations interfere too much with my schooling. And what’s the point of a degree that I will never use anyway? Any money I would make comes out of SSI, so essentially I would still have the same amount of money, just a lot less of the precious energy I already lack. I can make up to a certain amount before losing my Medicare/Medicaid, so I would probably also have to find a comparable health insurance. Now keep in mind that my longest remission since the age of 8 has been two years; that the immunosuppressives my diseases require mean I catch a cold when someone across town sneezes and those colds last longer, are worse and take me longer to recover from; AND that, as a comparison, the last time I made it through a full 5 day school week was in the third grade. Extrapolate that to the real world and even if I could find a job (doubtful in this economy, especially with no experience in being anything other than a Professional Patient), I wouldn’t be keeping it for long. For me to marry my wonderful fiance would mean that our incomes would also be married; therefore, he would have to be able to make enough to cover the loss of my SSI, food stamps, health insurance costs AND his own his own financial needs. He just started two new hobs, and though he hopes to stay with both companies for years to come, it will still take him time to work up those corporate ladders enough to make a comparable income. I am so thankful I have my home that I grew in, but I have to say, especially those times I am too sick to drive, I feel no different than I did at the age of 14!

  • Sari

    i am one of those kids who started out on SSI (from the age of 12) and have continued on it as an adult now 30. Like many others here, I have a multitude of health problems (some resulting from others, some totally unconnected), medications and doctors. What started as a temporary “help out” so my single mother could stay home with her only child who lost 2/3 of each school year to illness, hospitalizations and surgeries turned into the only thing keeping me afloat. I live (because I was born here, grew up here, what little family I have is here and all my doctors are here) in the most expensive section of NY there is, Long Island. My $781 in SSI and $100 in food stamps are supposed to cover a month of food, rent, utilities, the 20% co-pay on my 8-10 monthly dr visits not covered by my Medicare and Medicaid, pharmacy co-pay (for 15-20 prescription meds monthly), OTC medications (things like calcium for my osteoporosis and iron for my anemia) and clothing in an area where the average rent for a 1 bedroom, 1 bath apartment is $1000 a month.

    Yet I am lucky. My landlord has been running a tab on me (and my mother until her entrance into a nursing home) for 20 years without pressing for repayment and has only raised the rent twice in those two decades– and then only as the price of oil has gone up. (You see, his son and two grandchildren have Crohn’s Disease, as do I, so I think he is particularly sympathetic to my situation.) My neighbor kindly shares her cable and internet with me. I am lucky that I have a wonderful group of friends and family, who even as they struggle themselves in these horrible economic times give me a little money, or hand-me-downs, or take me out to dinner when they can. I have a fiance who works his butt off and gives me any extra cent he has to make my rent and bills (he can’t truly, officially live with me because I’d lose most or all of my SSI since I’d have to count his income, and his income won’t cover both of our expenses– so he just stays here a lot). But I am also lucky because I was accepted for SSI the first time I tried for it at 12. I’ve seen many of my friends (and even my own mother) struggle for years to be accepted for disability, being denied time after time as they sink further into illness and debt. (Apparently, as my case seemingly proves, it is much easier to be accepted as a minor; one case worker even flat out told me that most adults–18 and over– are denied just as matter of fact, without their cases even being looked at. Social Services views this as a way of “weeding out” those who don’t “really” need it by hoping this dissuades them from re-applying.)

    So yes, I am living “the dream” of being paid to stay home, except this “dream” barely covers my expenses, I get sicker and sicker instead of better, and I face the choice of either moving away from my support system and specialists (I too have an “ologist” for almost every body part, which adds up to a lot of new doctors to find) to find a less expensive part of NY to live or winding up permanently in debt.

    Which is why all this debate about “reform” for Medicare and Medicaid drives me nuts. I’m not saying there aren’t people out there who have (somehow) managed to play the system. But meanwhile, normal, law-abiding, needful people like us can barely survive on the pittance we’re given. And don’t get me wrong– as much as I wish it were more, I am deeply grateful for that monthly “pittance” because without it I would be out on the streets. But even more than that amount not being enough to live on, it is little compensation for all that I (and others like me) miss out on. I physically can’t do simple things like go bowling with a friend. The energy for going to the supermarket borrows from the energy to cook dinner with what I buy. My house is a mess half the time because I just don’t have the energy to clean, do dishes, do laundry and still be awake. What I wouldn’t give to trade that $881 (food stamps included) for a normal life!

  • Kat

    Thank you for such a great article Karen you totally captured how most of us on SSI feel. Unlike you I have never been able to work. I became ill at 15 and shockingly never got better. I have Undifferentiated Mixed Connective Tissuse Disease, Fibro, and 3 heriated disks. I fortunately was able to graduate highschool, and finish 3 years of college before I had to take a break. This entire time my mother has supported me, working herself into the ground and paying these TAXES everyone speakes of. But at 21 we both realized we needed help, we desevered it and I applied for SSDI, was denied that but received SSI (by the grace of God on the first try in a few months). And it much less than minimum wage no one can afford to live on that alone. But I feel like and am contributing to our household with my measly little check and $100 in foodstamps, my Dad’s insurance and Medicaid pay for most medical, but still lotsa copays. My SSI still is not enough to clothe or house anyone. I live in my lovely bedroom, can have new clothes, cable, internet, and occasionally new books because my mother and now step-father have to work.

    The government isn’t paying me to stay at home, its “paying” me to stay 15. I hope one day I can have my own life and maybe even a family of my own. The only thing worst than hearing “but you don’t look sick?” Is “but you’re too young to be that sick?” No one on the outside can understand how we feel, and I would never wish it upon them.

  • Sonja

    El Perro:
    I hate to see any one in your circumstance get so upset. It took years finally get my disability for MS because “I don’t look sick” so I understand your frustration. However, I think you misunderstood Carol’s post….or, at least, one of us did. I believe she meant that people like you and the little girl she mentioned are “overqualified” and in deperate need of help are being denied while people like Heather Mills are approved, along with many others who are not deserving. She was actually making the same argument as you, the same argument I have heard so many times in the US, and the argument SSI uses to (I think) to unjustly deny just about every applicant not willing or able to fight tooth and nail for what is already their THEIR money.

  • Maureen

    Great article. I can so relate and appreciate your taking the time to write this so that I am able to share with people with the hopes of their understanding my situation.

  • El Perro

    Oh and the * after “£100 a week” was to indicate that despite my many health problems, my inability to stand or walk due to degenerative spinal problems caused by a congenital defect, the brain damage, the autoimmune stuff, the MS, the severe depression, the inability to get down my own stairs, making me a prisoner in my home, and my partial-sightedness – I only qualify for low-rate care and mobility, a total of £151 a month. My main condition is medically recognised, has been around for many years, and involved neurosurgery to attempt to correct it, but the DWP don’t understand it because it’s too rare (affects 1:300,000).

    So no extra help for me. Because IB is not means-tested I’m not considered to be poor, despite having no bank account, no savings or other income so I don’t qualify for income support or housing benefit. A pensioner on ‘only’ £1200 a month qualifies for full council tax and housing benefit in my area. My £150 DLA goes straight to my local council, as I am in council tax arrears due to being too bloody poor to pay it. At christmas I had to sell my wheelchair to buy food. That £100 a week not looking so cushy now, is it?

  • El Perro

    Er, Carol:

    “Over here in England the government is finally, or so they so, clamping down on people who have been receiving Incapacity Benefit. They think that 7 out of 10 people who receive it can work but don’t because they get more money on IB than working.”

    Are you f***ing kidding me here? IB is A HUNDRED POUNDS A WEEK, about a third of minimum wage. Yeah, £100* is soooo much better than working. I need 68 prescription items a month at £7.40 each, my rent is £300, I have to pay to travel to hospital and doctor’s appts, my utility bill is £65 month. Done the maths on that? Doesn’t work, does it?

    Do you know what the actual fraud rate is for IB? HALF OF ONE PERCENT. The government’s own error rate is 4% The crackdowns aren’t about saving money, they’re about demonising the sick and disabled. You’ve made me really upset and angry, BYDLS is supposed to be a safe place for those with chronic health issues, not a place to hear some idiot mindlessly regurgitating the Daily Mail’s hate speech.

    I’m 33 now. I got more than £100 a week working my 20hr part time job at 18, than I do now. I am desperately ill can only afford to eat once every other day, and never dreamed I’d be vilified by my own people for ‘daring’ to get brain damage and autoimmune illnesses. (actual testable diagnosable ones btw, not diagnoses of exclusion)

    You’ve made me sick to my stomach.

    Tell you what, if it’s about money, and disabled people allegedly ‘bankrupting Britain’ (as you appear to believe that crock of sh*t) why don’t you write to your MP and ask why Vodafone were let off with a SIX BILLION POUND tax bill. Why don’t you ask why pensioners, who already get £10k+ a year, plus free prescriptions etc. are being given a raise of £50 per week (while I have to live on £100 a week)

    Oh, and the ‘new test’ that found people fit for work? I bet you don’t even know, because you believe whatever you believe in the tabloid rags, that those ‘fit for work’ are people with MS, cancer, heart failure, COPD, etc. Some died in the weeks following their medical, others committed suicide.

    Find out the truth before blabbering about fakers and frauds. Check out http://wheresthebenefit.blogspot.com/ and discover the lies you’ve so stupidly allowed yourself to be spoonfed.

    Why don’t YOU try living on £100 a week, see how great it is. I want to work, I’m suicidal most days, and people like you make me wish I could end it all. Ironically enough I can’t afford the prescription charge for meds that would definitely do the job. I can only afford my morphine one a month instead of weekly.

  • MiniMorg

    I totally hear ya.
    I have Fibromyalgia and Chronic Fatigue Syndrome to the point I can only manage part time work. I even struggle with that but no matter how hard I’ve tried I can’t claim anything and apparently ‘if you can turn a tap on’ you’re fit enough to work. As for the regular medical assessments–how on earth can they prove something that doesn’t even show up in tests? Then they’ll see you on a good day and that’ll be it.
    It really makes me furious and upset because my life is on hold as I can’t move out or do anything on the money I am on.
    (I live in the uk where the benefits system is just ridiculous)

  • Mandy

    Fantastic article, thanks!

    I’m looking forward to returning to my 5hrs/week job when my lupus flare lets go of me – I keep forgetting to ‘fight with it, not against it’. I miss work, the staff & the kids are great & Im lucky cos they are paying me sick pay – although Id rather be WORKING for the money theyre paying me!
    @ Carol from the uk – I had never realised MS Mills receives DLA & has a blue badge?! I only have it because I was born spina bifida – I am not sick enough based on Lupus and all its side kicks.

    **gentle hugs** to all!

  • SuzyQ

    Great article. I have FM/CFS I have been denied for disability benefits and everyone keeps telling me to try again. I applied on my own and filling out the paperwork was exhausting enough then to have them say no was just more than I could take at the time. But I will be 50 in a few months and most days my body feels like it must be 80. This article has inspired me to try again. Thank you so much for posting it. It was a boost for me to hear from others in similar situations and is a reminder that I worked hard at a either a full time job and some times 2 part time jobs, I worked between 60 -80 hours a week , from the time I was 14 until two years ago when I lost my job after almost 9 years of bad evaluations because I could not keep up with my work load. One day I woke up thinking I just can’t continue on like this anymore and I crossed over that very important line into the world of the unemployed. My husbands check barely pays the bills and we don’t have any health insurance so doctor appointment and prescriptions are a huge stress and a major topic at our house. I tried again the next year for 3 weeks at a new job with less stress and I LOVED that job. The hardest part of that job was getting there on time every day. I missed 3 days of work in that 3 week period and although I was let go because business was slow, those 3 days didn’t look good on my record. So, it is time for me to lift myself up by the bootstraps and get busy reapplying for those benefits.. Thanks again for posting. SuzyQ (aka Poosers61)

  • Karen,

    Thank you so much for putting the Ken’s in their place with your humorous, yet so truthful heartache of a story of why we get paid to be at home. I’m one of the “lucky ones.” I was approved for SSD almost immediately because I had to have three very serious spinal surgeries. So proving that I was unable to work was quite easy, just look at an x-ray of my back and you’d swear I was Frankenstein. But I’m not. I’m Mirandastein. And just shortly after my fourth surgery I developed this autoimmune illness that is seemingly impossible to diagnose. So I “lucked out” because I was actually “crippled” before I lost what was left of me.

    I miss working so much, I miss my co-workers and social interactions, I miss my using my brain (albeit there isn’t much of that which remains functioning most times). I would die to be able to work a normal person job, where I was just sitting at a desk all day. But there are too many days in which my body just won’t move, or my fever is so high I shake in tremors.

    I put my time and a lot of money into the social security system in the 12 years that I was an able bodied person (amend that to add able minded person too), and if I had a choice I’d still be working those 60+ hours a week to pay our mortgage (we bought a house 2 months before I got sick).

    I don’t get “paid by others to sit around all day and eat bonbons” for that’s so far from the truth. It takes every ounce of my being to get showered, dressed and out the door every day to go to a minimum of 4 doctors appointments per week, since I have over 20 active MDs at this time, I’ve got an ‘ologist for every part of my body. The SSD check I get goes right to my doctors. There’s not even enough left to pay my cell phone bill each month.

    I thank G-d every day for my husband who busts his tail to put food on the table and provide me with medical insurance. I am ever grateful to my parents who came out of retirement, went back to work to help support us financially so we don’t have to file for bankruptcy (dad) and can be my full time chauffeur, cleaning lady and attendant (mom).

    If anyone ever accuses us spoonies as beggars or looking for a free ride, take a walk in our shoes for one day. I bet most couldn’t last the full 24 hours, they’d be waving the white flag so fast! It just proves how ignorant some people are and how corrupt our social “security” system really is.

    <3 to all,
    Miranda Stein from NY
    (Facebook friend me with "BYDLS" or "spoonie" in the request. I'm always looking for more friends in the box!)

  • Karen Vasquez

    Dear Kelly,

    I know children with disabilities grow into adults who do collect SSDI. I will do some reasearch this week regarding that matter. It may have changed. Thank you for bringing that up.

    Thank you for reading and leaving a great comment,

    Karen Vasquez

  • Kelly

    “And for those who have never worked and are using SS or disability benefits, I say, kudos.”

    I’d like to know who they are and how they got SS. I worked for many years, became pregnant with my 2nd child and per doctor’s orders, had to leave my job. I ended up staying at home with my son until he was 8 and returned to part time work. I worked for almost 2 years part time. It was during this time that I could no longer ignore my symptoms and was finally diagnosed with Sjogren’s Syndrome and Fibromyalgia. My rheumatologist tells me I qualify for benefits, but SSDI? They say I don’t. It doesn’t matter to them how many years I worked before, they insist I need to have worked 5 out of the last 10 years in order to qualify. So how are those who were never employed getting SSDI?

  • Thank you for sharing this. You said things that I couldn’t put to words. I am not on disability yet, but this post is important.

  • Susan

    Thank you so much. To the other strong women who’ve commented, my heart is with you as well. I’ve been unable to work for over a year now.

    I, too, struggle with feeling guilty for having to go on disability. I find myself apologizing and wanting to explain to strangers that I DON’T WANT THIS. I’ve worked all my life and have done years of volunteer work in addition to paid work. I have worked extensively with HIV patients who have had to go on disability as a way to stay alive, and many of them do volunteer work to compensate for feeling guilty for “not working”.

    I have a very bad case of fibromyalgia, along with scoliosis, herniated discs in my neck, arthritis in my neck and spine, a history of brain tmor and a bunch of other chronic conditions that probably won’t get better. I was once vibrant and active; now I consider it a good day when I can bathe myself.

    I have a 17 year old daughter who confided in me last night that she thinks often of killing me. I told her I’d be defenseless against her. I’ve gone from a women’s size 10 to a little girl’s size 10 in the last year because I’m so ill, and they don’t know why. I keep losing weight and I’m scared.

    I don’t have the economic resources to take care of myself in the ways that are recommended by doctors, and MediCal won’t cover the therapies since they are not pharmaceutical but rather things like massage therapy, yoga, psychotherapy, and the like.

    I needed somewhere to confide in folks who’d understand how hard it is. Thank you all, and I wish you so well!

  • Dale

    Thank you for the wonderful article & for everyone’s comments. I don’t know one person who is truly ill on disability who is glad to be on it. Most of us would rather be functionable & feel like we are part of life once again. I have never been healthy, but better & worked most of my life. Like most, I look fairly healthy & people just don’t realize just how important it is for us to have validation because we are all so terribly hard on ourselves.

    Getting on disability was very difficult & stressful. People look at me when I hang my disability placard on the rear view mirror & walk out of my car. They don’t feel my pain. They don’t have a clue what hell this life has been like with CFIDS/FMS & trying to do what I HAVE to do for myself. People can be very ignorant & hurtful. I would gladly trade places with anyone to have a body back that can function, a brain that is normal & to be painfree for just ONE day. Oh yeah, a minor problem of never being able to sleep despite feeling like death warmed over is another problem that plagues me daily. Like I always say: “Walk a mile in my shoes & THEN tell me how I should feel” seems to be the only way people realize my emotional pain & anger trying to deal with chronic illness that never, ever goes on vacation.

    I can hardly walk anymore, so telling ignorant people to walk a mile in my shoes isn’t really fitting, but makes me feel better emotionally to have something to say to them with all their ignorance. We all seem to have anger issues & why shouldn’t we? Our lives have been taken away from us with little chance of having any improvement despite whatever they try to do for us or to give us. They are all “practicing medicine”. Thank you for listening & just grateful for others who understand what it’s like to be unhappy with the way life has turned out despite my plans for a very different one! Gentle hugs to all of you.

  • Carolynn

    Pam- I am in the same boat. Us moms who’ve worked so hard to raise good people are in a sticky boat. I feel ya.

    That’s all.. thanks for the great article. 🙂

    Carolynn

  • Zebra Princess

    Thank you, Karen, for writing such a poignant article. I, too, am living the dream…NOT!! I worked from age 16 on, when I could. I have Hypermobile Ehlers-Danlos Syndrome (HEDS). I wasn’t diagnosed until I was 48, a year and a half after I got to the point that I couldn’t work anymore. All through my life, no one could figure out what made me tick. I have lots of diagnoses. The final blow came when I fell at the wrong place at the wrong time. All my falls, pain, etc., finally got the best of me. What’s worse is that I was the breadwinner of the family. Now, my DH had to not only take care of me, but we had to figure out how to live off one income. We ate through all our savings, my retirement fund, sold things like mad, but there still wasn’t enough money. I finally broke down and applied for SSDI. I was one of the “lucky” ones, I got it on my first try. Whoopee! Now, my piddily check pays for most of our medical insurance, co-pays, drugs, and other assorted medical needs. Did you catch the part of the statememt that said “most of our medical”? Yup, my “whopping” check from SSDI is not enough to cover all our medical needs! Forget about trying to contribute to the rest of the household. We have cut out all extravagances and we still are losing our home. Thank God, we are selling our house to someone who is renting it back to us. God truly is the only way we have been able to keep our sanity!

  • This was one of the best articles ever-I know when I had to go on disability, I felt guilty. Why? I do not know. I have SLE with many complications from all of the meds. I had been an intensive care RN for over 20 years. I miss working terribly-don’t you think I would rather be working and helping save peoples lives than living on pain medication and other medications to keep me alive? It is a very difficult life, financially, physically, and emotionally. Although, I really am blessed with a wonderful husband and 2 daughters and a wonderful group of friends from all walks of my life. I think of most of us who are disabled and did not ask for it or do anything to cause it feel the same. We would rather be working. I know that when I do something to help someone anytime I feel better in my heart. The pains will always be here, but love and kindness will always win out. Someday those who criticize us-will find out the hard way and if they don’t and never feel any pain they are very lucky people. But I consider myself lucky, because I know there are others who are even a lot worse off than I am.

  • It’s hard to write past the tears. . . thank you for saying what I’ve been saying for years! You put it SO well and you have a lot of company (unfortunately) who appreciate you taking the time to represent us all!

  • Crystal

    I think we are all preaching to the choir, but I’ll still add my 2 cents worth.

    I dream of the day I can work again, even part time. Unfortunately I know that is not going to happen any time soon. Last fall I would babysit a friends little girl a couple days a week. I would be so wiped out that the rest of the day was shot as well as the next, by the weekend I was lucky if I could go to the store without my head exploding. Thankfully my friend suffers from migraines so she can at least sympathize.

    I know I am lucky to have gotten my disability at 27 with 2 years of back pay. Of course the back pay went to medical bills. For the record minimum wage sounds like a dream to me and I’m sure my mom would think it is heaven. I only get 60% what a full time minimum wage earner gets, my mom gets about 40%. How is that living the high life again? Especially when 1/2 the check goes to medical bills.

    I agree that it would be nice to put a healthy person in our shoes for a day or better yet a week. I’m looking at going back to bed and I’ve only been up for 1 1/2 hours. Better bed than hanging over the toilet.

  • Jen

    I wanted to quickly add that the government doesn’t easily hand out benefits, at least not to those of us who truly need them. More times than not, an application for SSDI is rejected with the first attempt! For people who are “cheating the system” I suspect they know just what to say to receive benefits, or who has an unscrupulous doctor willing to say whatever it takes. For us, the truth often makes us appear like we’re well “enough” to work. It is HARD for the honest to become officially disabled — and don’t think for one minute that it’s a label we want! Ugh, some people…

  • June

    Well said!

  • Carol

    Over here in England the government is finally, or so they so, clamping down on people who have been receiving Incapacity Benefit. They think that 7 out of 10 people who receive it can work but don’t because they get more money on IB than working.
    People claim it due to a ‘bad back’ (but some get caught whilst golfing) some claim due to being fat or even having pimples (no lie).
    There was a recent article in a newspaper here of how a little girl with one leg has had her disbility living allowance taken away from her because one of her teachers told the agency that she can actually walk and run with her fake leg. This idiot woman didn’t know that when the girl got home she was in pain, all she knew was what she saw for a few minutes in the girl’s day.
    So why does Heather Mills, who skated with celebs on ice and runs still has hers and her Blue Badge (disability parking card)?
    Hopefully, the little girl will regain her benefit and Ms Mills will have hers taken away.

  • Kathleen Auen

    Kudos to you for a very funny article, while addressing an important issue. I am unable to get disability benefits because I don’t have enough years of work strung together. Well, duh, that’s because I couldn’t work because of my many disabilities. Now,in spite of working as hard and as much as I could for many years, I can’t collect a dime. Fair? Not in my book.

  • Thank you. I really needed this today. I was starting to feel guilty AGAIN because I sit home and do nothing all day, but I get that great big giant check from Social Security Disability every month.

    I was fortunate. I was healthy and able to work right up until I was 61 years old. I started working at 16, so I got 45 years in, during which I paid into Social Security and Medicare. I’m married to a man who is almost nine years younger than I, so I had actually planned to continue working until he retired so we could enjoy our golden years together. Well sometimes plans just don’t work out. I went from perfectly healthy, to totally unable to function normally in one fell swoop. I have Superior Canal Dehiscense Syndrome which affects my balance and orientation among many other things. It is a lot like having vertigo all day, every day. There are a host of other little irritants too, like hypersensitivity to noise and inability to keep food down. And, there are headaches beyond anything I ever thought possible whenever there is a low pressure system passing through. But the biggest part is not being able to stand or walk without feeling as if the world has tilted off its axis. So much for working till hubby retires.

    Some days I actually have enough spoons to be able to get a load or two of laundry done, if I do it one step at a time and rest between. It’s amazing how much energy it can take just trying to function in a continually spinning world. The rest of the time I am basically useless, and just getting out of bed is a major accomplishment. Lately I have been feeling as if I am too much of a burden on my wonderful husband, and society. After all, I am being paid to be useless. This post today helped me to realize that dammit, I put that money in the system for 45 years, it’s my money to get back out when I need. And now, I need it.

    Thanks to you and everyone else on this site for helping me keep what’s left of my sanity.

  • Awesome post!!!!!!

    I just wish the people who see things like that could walk a day in our shoes. Just one day would make them see that living on disability benefits isn’t fun, easy, or pleasant. There are few of us who would choose to be in this situation if we had ANY other choice.

    Our society is so screwed up, the way we see sick or elderly people as having no contribution to make. Personally I think we have so much life experience and so much to give to those around us. People could learn from us and society could grow in good ways. Every single person on this planet has value.

    Thanks for writing this post. 🙂

  • goddessoflubbock

    I have worked since I was 14. I have 4 kids, raised the first two mostly alone, and never took a government handout.

    Last year I landed in the hospital with sepsis and bacterial endocarditis and some young student doc got mad bc I was refusing an unnecessary invasive proceudre. He said you’re costing us money here. Thank heavens I was pretty ill!

    I’m in a power chair now and on oxygen 24/7. When I was still working I was in the elevator and a guy pats me on the shoulder and says “wow you’re lucky you don’t have to walk around all day”. Really? If only he knew what I’d give to walk around the block. Just once. Or is he knew about the sores, rashes and other problems we experience.

    Long way of saying, bravo!

  • *****standing ovation*******

    I don’t think I actually stood up and cheered at an article I was reading on the computer before….

    This is a first.

  • chris clark

    This all very very true. We American’s all pay into a system that is designed to act as a retirement account (SSI). Every American recieves an anual notice of what your benefits will be on a monthly basis (at that time with the level of income deposited/payed into to date). This is not an approximate amount it is the actual amount. I do not know a single person who is able to actually LIVE on the check that they recieve from the government. Infact, those that have only that check as their only form of incom, live in absolute POVERTY. No one is getting RICH, or living comfortably. 99% of these Americans are ILL in such ways you cannot even believe. With DAILY pains and suffering in which you would only wish upon your worste of enemies. Open your eyes and hearts and free your mind of predjudices and really take in what these HUMAN BEINGS are going through. Try to put yourself in the shoes of those you so often call lazy, thief, free loader, scam artists, etc. etc. I know for fact you would spend days crying your eyes out and curse god for imposing sch a terrible thing upon you. To not be able to move from your bed to the bathroom to do your business or get there but not be able to clean yourself up afterwards, to have people stare at the open wounds on your skin, or stare while you walk or struggle to pick your keys up or pitty you at every turn. Where’s the humanity at? Most of these people are Veterans, do you wish this upon them? They gave all for you to even be able to learn to read this, to own a home, have a job or be a business owner. And if they aren’t a vet they are/were probably married to one. What a great way to show your Proud to be an American. By scorning weak, the disabled, the little person. I’m calling you out Bully. Don’t take from these people heck yourself, Doofus. You want to cut a budjet, cut the military budjet. START TAXING THE RICH, and toss out the Corporate Laws and REVISE THEM SO THEY BENEFIT AMERICA, not the damn bottom line. MONEY IS THE ROOT OF ALL EVIL, NOT THE WEAK AND SICK.

  • Jen

    Great article! I hear from people that I’d be better off if I worked. Really? So I’ll go back to work and just wait until I land in the hospital again. That sounds like fun. Work makes things worse, but we’re exaggerating, right?

    Yes, I worked. Yes, I paid into my benefits. Yes, I would rather be working. Nobody understands that! If I could work I’d be back at the job I loved! I have more doctors than anyone would care to ever think about and I can’t keep them straight so I have to write them down. Some weeks I think I spend more time having tests and seeing doctors than I did working full-time!

    Medicare isn’t as wonderful as people think. I had much better insurance when I worked. Paying 20% vs. a co-pay? I’ll take the co-pay every time. There is a lifetime limit on the number of inpatient days I’m allowed – for the illness that caused me to go on disability. I’m 40 and have used a good number of them. Sure I could get really cruddy care at an “all-encompassing” hospital. Or I can go to the specialty hospital and get better care, therefore less likely to be hospitalized again, but am eating away at my lifetime days. How is that right? Each time I have to go to the hospital I have to make a choice: good care vs. money. Yeah, I’ll go to work!

    I also want to be in a grad program, a doctoral program. It’s my goal to do that, but this illness has sucked the life out of me. What are the chances I’ll be a productive member of community? I don’t know, but I’ll do anything I can to go to work, even if it’s part-time. Oh, but be careful since I’m limited to the number of days I can work and still receive benefits. Yes, they are called benefits for a reason. My check covers my doctor’s appointments (covered at 55% – and increase from 2 yrs ago), my medications, testing, etc. Yes, I’d rather be at work.

    How is it that we’re lazy? I wish people would take a minute to think how much those of us on disabililty have to do in a day. It’s a good day if I can get away without a nap! No, a great day!

    Yes, I’d rather be at work.

  • bobbie

    i have been working since i was 13 (the same year i found out i had lupus) now i am 40 and just started getting disability which is about a fourth of what i made when i worked. can’t get by on that when you still pay for some of the doctors visit and meds. i spend less time at home now then i did when i worked.

  • Michelle

    I am also on disability and joke with my brother that my job is my afternoon “nap”..but I nap b/c my lungs don’t function with severe asthma, I can’t walk up a flight of stairs without needing a nebulizer and I have 2 kids, a 3 yr old & 7 yr old petri dish that have put me in the hospital 6 times this winter with their “viruses”. In the hospital now & my doc asked me how I can limit contact with my kids….seriously?????

    The disability helps pay the mortgage but that’s it. I’ve had to withdraw from a graduate program and in terms of “living” on disability, that is a joke. I exist while those around me live.

    I try and make the most of moments with my truly amazing family.

    Thank you for your wonderful article!! I never imagined turning 40 next month that I would have the body/life of an 80 year old.

  • If I hadn’t worked 60 to 80 hours a week for the state when I was a Child Welfare Specialist out at all hours of the night investigating child abuse and worse child deaths and paid for disability insurance I wouldn’t be able to support my son. For 3 years we lived on $1100 a month, less than half my normal salary while waiting on Social Security to determine with their quack doctors whether or not I was disabled. When they finally did and paid me back pay I had to pay back the insurance company for the $1800 a month they gave me for those 3 years(I had to pay over $600 a month for insurance so I could keep seeing my doctor). I ended up with a little over $8000 for the benefits for my son because the insurance company couldn’t touch that. During those 3 years of waiting I had to wait over a year and a half to get my medical insurance to approve the surgery. By the time they did I was totally and permanently disabled instead of temporarily disabled where I could have gone back to my job. No I don’t look sick and I’m sure some people think the only reason I have a handicapped sticker is because I’m fat. When the pain is really severe I have to use the motorized carts at the grocery store and when someone sees me stand up to get something high on the shelf they look at me with this look like “Why are you using that cart, it’s for disabled people”. I’d gladly go back to my 60 to 80 hour a week job if it meant not living with pain 24/7.

  • Bravo! What I get from SSDI is roughly a minimum wage paycheck — a far cry from the good-paying job that would have allowed me to take nice vacations, buy fancy clothes, spend like a drunken sailor. And from that, I have medical co-pays that a minimum wage earner wouldn’t have because they don’t need specialists and prescriptions. Oh, yeah, I’m living the high life at taxpayer expense.

  • Cat

    Awesome article!!! Having FM I know exactly what you mean.

    Hugs!!!

  • Miranda Rice

    Nothing but compliments – one fantastic, explains-it-all-article, especially the part about the disability check that we invisibly disabled folks get is OUR OWN MONEY, now being PAID BACK to us. So you pay into disability, but don’t get any back? THANK YOUR GODS FOR HOW BLESSED YOUR LIFE IS! YOU are the LUCKY ones, because imagine how much worse it could be, if on top of all the common human struggles with life, YOU ARE SO SICK you often wish to be dead.

  • Very well written and with a sense of humor; but the hard facts! You may think I am prejudice; maybe I am, but so many people in our country are living life with illinesses that stop them from living a full healthy life. We must all see beyond the healthy look, and realize, people who don’t look sick may be. You do deserve your benefits that you paid into, to be all that you can be. And for all who disagree… walk a mile in their shoes!!! Visit a hospital, Visit and talk to the patience, Or if you have a friend who is ill reach out, it is an eye opener you will never forget! Life is good. Rock on Karen, I admire your strength and will to overcome all that has been put in front of you! I Love you, Mom

  • Pam

    I hear ya! I’m in a similar but a little different situation. I’ve been a stay at home mom for 17 years with the understanding that when they go to college I would go back to work to help pay for college. Now I’m disabled and can’t work and do not qualify for any help from anywhere. I just wrote about this a few days ago here http://thejourneyleadshome.wordpress.com/2011/03/24/an-angry-ill-citizenmother-of-these-united-states/

    It really makes me mad actually.

    Thanks for the article.

    Pam

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