When You’re Not Sick Enough

 

Before I even get started with this article, let me state for the record, that for those who have been approved for short or long term disability, you deserve it. You’ve suffered just as much, if not more than any of the rest of us and I do not begrudge you a thing. In fact, I understand that it’s a double edged sword. You aren’t happy about the fact that you need disability, but to simply survive, it is much needed and warranted.

Now, that being said, I wonder sometimes exactly where and when I fell through the proverbial cracks. I have a diagnosis. I actually have five diagnoses. I have the MRIs and CT scans to prove the 90 year old woman inside is cleverly disguised as a 37 year old female powerhouse on the outside. I most definitely have the monthly medical bills, which probably will be finally paid off by my great-great grandchildren, to validate my repetitive emergency room visits. I have all of this and more, so why do I keep getting denied disability?

Simple.

I’m not sick enough.

That statement is quite an emotional conundrum to me, as I don’t know whether to laugh till I cry or cry till I laugh. How in the world can I not be sick enough? How can the tears I cry alone in the early hours of the morning because I know it’s going to be a struggle to even get out of bed, be belittled to the point of humiliation? I had so many questions swirling around in my head that it was making me dizzy until a former rheumatologist of mine, let’s just call him Dr. HeadUpMyOwnHiney, gave me the cold hard truth as apparently others saw it. I didn’t look the part.

Thus befalls the curse of the invisible illness.

I have been turned down for disability more times than I even care to share with you all. I have begged, pleaded, cried and would have gladly paid someone off, but the answer is always the same. “You are still able to work a full time job.” Yeah, I can. I can most definitely work a full time job. I can even get up at dark-thirty and drive an hour to said full time job, where I end up putting in a 10 hour day fueled solely on caffeine and Skittles. I can also come home, never cook for my family, never play with my children never put my son to bed and say his prayers with him as I kiss him goodnight. I can’t do that because I can’t climb the stairs at the end of the day. I come home and go to bed. I stay there until the entire process starts anew the next day. And weekends? Forget about it. Very rarely do I even get out of pajamas for the entire 48 hours of the “weekend”. (If you could see me, I would be doing air quotes as I show off my perfected eye roll). My body is broken, I’m sick more than I’m not and until recently the “Sunday” part of my “weekend” was spent with my head in the toilet due to one gnarly shot of chemo.

No, I absolutely am capable of working. I work my rear end off for the craptastic insurance I have that left me with thousands of dollars of medical bills and a penchant for passing on much needed testing because I can’t afford the out of pocket part of my deductible.

Here’s the stripped down truth: That healthy glow I have is self-tanner. It’s a nice orange color that makes me look like I’ve been rolling around in an open bag of Doritos because the rash underneath mixes with the tanner. I’m thrilled that my skin shade of “Oompa Loompa” impresses you. The bouncy volume in what’s left of my hair is a direct result of 45 minutes of teasing it with a fine tooth comb so much that Peg Bundy would be jealous of the height. The sharp business suit I wear to the doctor’s office is because apparently it is frowned upon to wear sweats, t-shirt and flip flops to work. You know…because of that “fired” thing that I try to avoid. And finally, that strong put-together exterior that just stares intently at you (I’m talking to YOU here, Dr. HeadUpMyOwnHiney) as you tell me you will NOT agree to support me in any litigation for disability, is because I won’t give you the satisfaction of using tears to prove my pain. I save those tears for when I’m alone in my car outside your office, where you can’t see me…where no one can see me.

I’m constantly reminded of the phrase “looks can be deceiving” because I live it everyday. I will continue to push myself until something gives, whether that be THE system or MY system, because I just don’t have any other choice right now.

Because I don’t look sick.

 

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with Systemic Lupus Erythematosus in 2001 and in the time since, has added Scleroderma, Hashimotos and Celiac diseases. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla. She can always be found somewhere in social media-land causing some sort of trouble. Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.

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  • Lexie Perryman Smith

    PLEASE, PLEASE READ THIS IF YOU HAVEN’T GOTTEN YOUR SOCIAL SECURITY BENIFITS. So sorry to come on your lovely site and start yelling but I needed everyone to pay attention. Before you hire a lawyer to help you, and then take a portion of all your back pay, call, email and write your govenor, senators, congressmen/women and reps. After being denied over and over for years, I had a check in hand in 1 month, along with a letter from the judge appologizing for the stupid, painful and unnessicary wait. All that money was my own, my lawyer got a cut before I got mine. God bless you!

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  • twade

    I under stand how she fills! I have had SLE Lupus, 1999. I don’t even have any support from my husband, he is trying to make me stop all meds been on sense 2000!Crazy right? Could use some kind of advice about now, we have been together for over 32 years. Call me SaD!

  • Lymes

    Someone understands!
    Thank you
    lymes

  • Mrs. Gebby

    Onewhitetree,
    I was a certified Pharmacy Tech back in the late nineties. My parents died six mos a part in 97/98. After that everything went down hill. Especially my health. It took my brother in law / doctor to finally figure out I had fibromyalgia. I was missing so much work. I had two kids to look after, plus the house. It was awful. I finally got called into my bosses office with our H.R. person. You know that’s never good. And it wasn’t. Even though I used my FMLA for my illness, I was informed I missed too many days and it had to stop. They understood I was sick, but my job wasn’t being done. So I was given an ultimatum. I miss one more day I was basically out of there. Boy, I wished we could of afforded an attorney! I was in my rights with my FMLA in place. So, I worked for three more weeks, not missing one day. It was hard,but I did it. My husband finally said, “Why don’t you just give it up.” Fortunately, I had money in a 401k to pay off some bills after I quit. The company could of cared less about me. I loved being a tech! I had finally found something I loved. And I was good at it!
    I waited five years before I decided to file for disability. And I got it the first time filing! I couldn’t believe it! I have to thank my brother in law for that one. Keep your head up. Find another doctor! Find one that knows how to write up these letters for the disability office. There should be no reason why you couldn’t get it. Thanks for listening.

  • willow

    I am a woman in my forties, who has recently been diagnosed with multiple autoimmune disorders. We raised 3 wonderful children who are now young adults, have college degrees, wonderful careers and they all support themselves quite well. We were engaged parents, an active family and very healthy (until I became ill). I was the breadwinner, and my husband was the “nanny dad”. I enjoy what I do for a living, I take pride in how many tasks I am able to complete simultaneously, all well being the “go to” person for my entire family. Since I have become I’ll, I have gone down hill so quickly, it seems unreal. I am literally bed bound 80-90% of the time, in fact, some days, all I can do is cry from the immense (non-stop) pain that I rarely get a break from. My blood work appears to be perfect, my vitals are athletic, yet I can assure you, I feel as though I am dying. They were able to diagnose me via biopsies and nothing else. I am not given anything for my pain and am lectured by my dr’s about how important it is for me to keep working and if I stopped, I would only cause myself more problems. I am not a quitter, I’m a fighter and these autoimmune disorders have literally “sunk my battleship”. Nothing has taking me down as fast as this has and I am truly not able to “strap up my boots”, “put on a smile” and fake it through my work day….i can barely brush my teeth, I can’t keep my house or bills in order anymore and I am not able to function well enough to continue doing my job. not one Dr will provide me with even temporary disability until I can get stabilized. It doesn’t make sense to me at all. I’ve been put on MULTIPLE prescriptions and been forced to work while learning the side effects from each pill prescribed to me. I would MUCH rather work and feel good each day than be in this horribly sick situation. Disability would not be a “cash cow” for me by any stretch of the imagination, but it would help provide me some peace of mind while I work on obtaining even a sliver of quality of life back. I don’t understand why my doctors refuse to give me a break from illnesses that have none. What is the magic word or whatever it takes to get a dr to provide some sort of disability while they test pharmaceuticals on me?

  • onewhitetree

    Wow. So I’m 24. Diagnosed with crohns disease, related arthritis in my hips and shoulders, fibromyalgia, chronic ear infection with a collapsed ear drum, fever and dizziness, can’t sleep, and work as full time job in a pharmacy. I have to call in sick to work all the time, I have a very good boss, but I know one day its probably going to be to much, my co workers hate me and think I’m lazy, even though I work my hinie off when I’m able to be there, when I really don’t even feel like I should even be… You know.. Moving. I want to be a pharmacy technician, but I don’t even know how much longer I’ll be able to work, and everyone who doesn’t know me or what im going through passes judgment and talks crap behind my back about how I take to many sick days and go to the Dr. All the time. Walk a day in my shoes…. You won’t even be standing. Life is hard.

  • Grace

    I so loved reading this. I have been denied twice so far for Social Security. What got me in your blog here was the ” One gnarly shot of chemo” I have to wonder if you are referring to the not-so-fun methotrexate? I too take this shot. I take it on Friday and spend the weekend in the bathroom as well. I hear the “but you don’t look sick” however now that I have been losing my hair from this shot. I also love the spoon theory. I do not have lupus, but I have an other autoimmune disease. I feel for you in writing this. I am still awaiting my court date for Social Security. I am amazed at the way the system works. I have been in and out of the hospital for the last few months due to being immunocompromised. and catching everything in the world, My doctors say stay away from anyone contagious. So that pretty much leaves me house bound for the duration of the cold/flu season. So much to deal with and yet we fight. Our bodies fight itself and we fight the system. Thank you again for this, it shows me that I am not alone in all this. There are many others out there suffering.

  • Julie UK

    i feel beyond sorry for this poor women, to say i know how you feel would be to lie “the system” is metaphorically screwing me too because as you said “I don’t look sick”

  • jackie

    I kept a “sick” journal that I wrote in daily. I also wrote a letter to the disability analyst stating I am more than just words on paper and poured out my feelings. Both disability and my doctor got a copy of sick journal. I started the journal because it is so easy to forget things when you are chronically ill. I also made a list of things I cannot do . I got no argument from disability and was approved within 8 months. I was blessed. hopefully this will help some.

  • Mark

    I’ve been having an excessive amount of pain in my joints nerves and muscles. My head and neck have been aching for weeks now. I keep going to the er but they keep saying nothing wrong. I’m I’m so much pain I’m I’m tears. What should I do? I’m a 27 yr old man with no health insurance.

  • chans

    I spend my days “working” (I’m actually switching careers bc I kept getting fired for being sick, so it’s school and internships, but still a full-time schedule) and MANY nights and weekends in the ER or hospital “compensating” for what that does to my body. I’m “lucky” that I already have SSDI from a time when I was hospitalized for several months at a time, but I doubt that if/when my case gets reviewed they will renew my benefits (which is CRAZY to me, because my overall health has deteriorated SO MUCH since I was first approved).
    You can’t make assumptions about a person’s health based on how hard they push themselves. When we need to survive, we do things we know we shouldn’t, and pay the price…

  • don’t drive until or unless your doctor tells you it’s okay.

  • vicky

    I broke my foot 6 weeks ago the past 2 weeks I have had a boot on my foot is alot better and does not hurt nor bruised or swollen any more. My sick note said im fit to return to work but do light dutys but unable to drive. Its only week till i go back to hospital to get a review which will probably be the your fine to drive etc, would I be covered to drive now?

  • rajxwk

    she has to feed her family also–which means she needs some money

  • Kelli Hernandez

    But unfortunately, it’s attitudes like this that bode ill for those of us with invisible illness.

  • keepyaheadup

    I’m so happy I found his site. I’ve been faced with the same problems for soon to be 12 years. The truth of the matter is I became ill at 15. I did not apply for SSI until around 22. I was told, had I applied ONE YEAR earlier it would had been approved as a child. Nine years later, my body has more problems due to MDs not attempting to cure me, but manage my symptoms by prescribing medications that in the end made things worse. It was not until around until pregnancy that health officials ( nurses, doctors, etc.) Took me seriously. Unfortunately, a decade later I struggle to raise my child alone (she is a social wreck due to all my health problems and stress.) At my worst I fought through the storm bouncing from one job to the next because I could not handle the emotional aggravation on top of the physical pain that I have to deal with every day. In fact, during an echo the doctor asked ME … “how do you do it?” At the very least, you would think that the SSA would now approve me for SSD and not SSI. After all, I worked my butt off as an employee and entrepreneur just to gain enough of “credits” to get disability. It amazes me that the United States Government wants me to drink iodine, remove a gland + more just to get BACK the money I’ve lend to them. It’s such a same. I’m under 35 and have a problem with EVERY body system including over $50k ( spent as an adult- as a child probably around $10k) on dental expenses due to autoimmune diseases and a money hungry industry. I don’t know if my post makes sense because I’m just rambling…but my heart goes out to everyone who suffers from an invisible disability. It hard but we will make it. I have the same illnesses at Stephaine ( the Editor) + a bunch more. It really sucks ( especially when you have no support from family and constantly find yourself running our of funds and needing a way to make money quick. At least I can say…it may not be the best or even much but I found a way to survive without public assistance. Although I do receive subsidized healthcare that requires co-payments.)

  • Passing through

    I have not read all comments. Maybe this has been said before. The best suggestion I can give to anyone, and it’s not easy to do, physically or mentally, is when you answer that long questionaire they give you to apply for disability, be totally brutally honest, with as many details about your struggles as you can think of. If there’s not enough room, write on the back. I spent a lot of time hiding all that in my daily life. Pretending I was better than I was, sometimes. So people wouldn’t worry, or lecture me, or harm me in some way. It’s counter intuitive, and emotionally hard, to be 100% honest and write down EVERY single thing that’s wrong. Everything you cannot do. Every hardship you have. We’re used to focusing on the good and trying to stay positive and not define ourselves by negatives and “can’ts…” You HAVE to on those forms. Don’t lie or invent issues or symptoms you do NOT have. But be completely and thoroughly honest and detailed about every single difficulty and struggle you have. Don’t hold back on those forms. Tell it all. You will feel like crap admitting all that, and it might take you over a month to be able to do it (both physically and mentally), but try your best to answer in that way. Good luck to everyone applying.

  • JOYCE

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    Dr Atakpo is like a father to the fatherless.. i never believed these will really make a change in my marriage, and i never have it in my thought that i could ever been with my husband Mr Devis after divorcing and ending our 33years marriage…. My life was upset i never knew where to start from when my husband broke up with me…..My name is Tanisha Devis from Poland but got married and live in Chicago USA, [email protected] is the right email address to contact for an urgent help in getting your lover back…. My husband and I have been together for 33years before he divorced me and i was so upset because i thought i have lost my marriage forever… i did all i could to please for my husband to bring me back home but all to be in vain.. i had to travelled away from my state because i was not having anywhere to stay because my home was not conducive for me to stay because my husband want me out of th house, i travel to a friend of mine in California, one night, when i was searching on a good spell caster results that help in bringing back lost lover’s and husband’s, i found an interesting story that was shared by Santana Valdez From Texas Huston, about a good spell caster called Dr Igberase,and how he helped her in getting her husban back home, and i decided to put a try in contacting him… he replied me back.. i thought at first these was just normal and he told me that i was going to get back my husband after a period of 28hours i still doubted him…. But today as i am sharing these good news is for me to express my experience to all the whole universe that these is a good spell caster that helps in bringing back lost lovers and he is ([email protected]) I am happily with my husband and my 3 kids, TARRY, WENDY, JEFF… great Atakpo i thank you for helping me to get my family back…. his email address is ([email protected])
    Thanks, From Tanisha Devis
    Igberase is my Granfather because he was always there for me when i needed him mostly and he is the reason why i ma happy today.

  • anonymous

    I’ve been turned down for disability and can’t afford an attorney. I’ve been working sporadically but haven’t been able to hold a job and lost one explicitly because of the sleep disorder that goes with my debilitating personality disorder. (I was an “independent contractor” so theoretically legal, although I don’t believe that classification was correct.) My problem is that people don’t believe my disorder is actually debilitating. They think I’m just spoiled because my parents and boyfriend will support me if I don’t have a job, and that I’m lazy and refuse to work. It doesn’t help that I’m a very accomplished classical musician and am able to practice for hours daily. As if the fact that I can find the spoons to do the one thing that gives my life any semblance of meaning proves that I can do anything else.

    It breaks my heart to see the attitudes people take toward people with disabilities – as though relying on SSI makes a person worthless and a drain on society. Life is too short to make things any harder for people than they have to be. If I could work they could take half my paycheck and give it all to hungry and disabled people. It would make me happy to know it was making somebody else’s life easier.

  • texann

    If you haven’t already, please see an attorney that specializes in disability cases. The consensus seems to be that all claims are turned down at least once but usually a disability attorney can get a favorable ruling within months. Good luck.

  • ladysheets

    I agree, when they see you can work like that they are not going to give you disability. many people are turned down because they are still working.

  • Sky

    I just found this article while looking up something for a friend. She has a severe case of depression and her parents think it’s just a bad attitude.
    I know what you’re feeling like. At least partway. I have been diagnosed and medicated for depression since 3rd grade, and I am now a senior in college. I was formally diagnosed with Asperger’s Syndrome in March/April of my sophomore/junior [I honestly can’t remember which] year of high school. And this January, my depression diagnosis was altered to “soft bipolar, depressive type.”
    I am medicated for Fibromyalgia and have been for 4 years.
    I’ve had people tell me flat-out that I was lying when I felt the need to confide in them about my place on the autism spectrum. “But you’ve always gotten an A+ in math!” Even though that is one of the stereotypical [and actually somewhat common] traits of the spectrum.
    Joints crack and I can barely move if I don’t take my medication? “You need to exercise more.” I can’t. I can take a mile, mile-and-a-half walk on the road near my house and then I just want to sit down and stare at the wall, which gets me called lazy.
    I heard once that there was a useful explanation for dealing with that kind of person. “Would you look at wheelchair-bound person and suggest the two of you run across the street… and then get mad when the person couldn’t?”
    I’ve found that it does help at my workplace. I’m a cashier at WalMart [two months now] and I’ve been warmly thanked for making just a little effort to help. Offering outright would be rude – “I see you’re in a powerchair, do I need to unload and load your cart for you?” Instead, I watch for small signs that they do need help, such as shaking arms when lifting bags. And offering to help organize their cart [especially with full ones] has never gone wrong. I’ve met some amazing people on the spectrum, as well as during my stay at a psychiatric clinic [which I’m not proud of, but all the other patients and the staff were absolute angels].

    But when I snap, when someone deliberately or otherwise pushes every single one of my buttons, almost everyone criticizes me for being ‘insensitive’. I can’t explain. They don’t believe me if I cite my diagnosed anxiety disorder [possibly PTSD due to stalking, bullying, and sexual harassment] and say I’m overreacting.
    I use the Spoon Theory and other resources on sites like this to help people understand. Depression isn’t laziness. Bipolar isn’t a coverup for a temper. And so on.

  • Melissa J Cunningham

    Oh, girl. You have Lyme disease and you live in an area right in the thick of it. It’s so obvious to me and if you haven’t been tested, and tested correctly, get it done. The lab I know, that specializes in testing for Lyme (because it is actually very difficult to get a positive result even if you have it) is Igenex. Send your blood there. Have the Western Blot test done. NO others. The others are even less accurate. I sure hope you can find help. You will NOT get better until you get the Lyme under control. All of these “other” illness are very common with Lyme. Almost always misdiagnosed. It affects your hormones, your nervous system, your digestive system, muscles, joints… everything. It shuts down your whole body. Believe me. I know what I’m talking about. 🙂

  • Red

    I got my dissability thru a group called Allsup. Go on line and give it a try….good luck Fibro is miserable but like others it is an invisible disease.

  • Ezme Green

    You are not being practical about this. You should take care of yourself and your family first and THEN see if you can work….sounds to me like you wouldnt be able to….They are working you to death literally…Stop getting up in the morning….Stop the caffiene and Skittles…Stop being a slave..Good luck to you…

  • Panheadvic

    I suffer everyday w/R.S.D./C.R.P.S. 9 years. I received disability in 40 days. But I was living in the FL.Keys then. But what I did. I faxed them everything I had. Every DRs note. MY journaling everyday. Everyday I would fax them something..Especially my journaling. It could only be 1 page or 10 pages but I kept faxing to them. Don’t ever give up. You will get it. This terrible Dragon I have has put me in a wheelchair. Both legs, feet and now hips. I went from riding a 1960 PANHEAD HARLEY DAVIDSON to a wheelchair. I rode everyday, till one day a Medal Bed Frame fell off a rafter and landed straight down on my bare rt. foot. Gashed it,fractured it, and it hit the nerve..That was all she wrote. This is a nerve disease. It goes to the brain. All those little neons in my head go crazy. And puts you in a Flare-up..Then Bed..The pain is excruciating. I cant go any where. In case the pain gets so bad. I am full of anxiety..I sometimes can’t leave the house. I want to be me again! But it will never happen..And I have not come to terms with it at all. It ruined my life. I am going to give Ketamine Infusions a try in Miami. I am in MN. I have a Pain Clinic, But hes such a jerk.And he will only take Cash, $7000.00 of it..He will not take my Insurance. My other DR. in Miami will. But I just have to come up with the cash for the hotel. I don’t know how long I will be down there, If I get there at all. So I have a Invisible Disease also…

  • I am one of those people who is on permanent disability, after pushing myself at least 5 years longer than I should have at work. But guess what!? I don’t look sick enough to need it. I’m willing to bet the only reason I did is because I live in Canada and things are perhaps different here.

    I used to fumble on an answer to “you don’t look sick to me”. What do you say to that? How do you respond? My final winning reply is either “Thank you and thank you to Cover Girl and Maybelline for making this day possible” or (when I’m in a pissy mood) “Compared to what?”

    And then I walk away. With my cane. And my limp. And the grimaces of pain as I walk. Walk away.

  • Guest

    Yes there are people that do abuse the System but they will be found out..Totally agree with this page. Well said… 😉 😉

  • Guest

    But people can’t predict if they ill be ill… Even people that are healthy. So yes ill health strike any time – even you…

  • Guest

    People would rather be healthy than being ill. Every person has their reasons & every persons illness is different.. But rather be fit & healthy – just leading a normal life .

  • Guest

    I am sure we all agree – but we all hope the liars & Fakers are found out. Coz they are lying bout being ill. Sadly people on benefits are stereotyped..

  • Guest

    Such as morphine, Fentanyl and there’s so many strong drugs… Which we be classed as high risk – and you have to think of other people’s safety in the work place.

  • Guest

    But Geunie people that very very ill we are on the taxpayers sides. It’s not a life style choice. I know there probley so many people that feel the same way. We did not choose to be ill.. If we was healthy we would be going to work too. – not only are we ill most of use have to take strong controlled drugs

  • Guest

    Coz when ever you read stuff bout people on health benefits it’s very very negative. Had no choice in matter… It’s nobody’s fault if they are ill. If only people could see the bigger picture. It’s no life style choice.

    There are days Just too weak & washed out.

    To anybody that’s not ill & working –

  • Guest

    Arthritis, bone eating, then top of that l have major bleeding from doing a number one and a number 2. I would love to go back to work
    & lead a normal life. I hate being like this. Yet it’s all negative – I feel like chav.b

  • Guest

    I can totally understand. I am 31 years old… I have body of 95 year old…

    My nan is 98 years old – I wish l could be like her. She’s amazing for her age.. When ever l see her it’s my nan that helps me… With walking from the chair – so fustrated – I should be helping her..

    I don’t have 1 illnesses but there’s a few… Asthma, IBS , depression

  • kim

    Would love to hear more details of your health problems and history and actually surprised to just hear you got it so quick, first time with no details to your health history. Being someone who’s had 16 surgeries and 18 hospitalizations in 13 years and denied twice after constantly trying to work while in chronic pain and vomiting and becoming unreliable at every job I try part-time is frustrating, stressful and just wrong that I cccc live this way then hear people get disability for depression they’ve had for 3 years, not saying it’s not a reason, but what about people like me feeling with so much pain, surgery and hospitalizations that then cause depression on top of physical pain and we get denied? I’d love to hear your story and maybe you could help.

  • marcelina

    This speaks my life… I have been approved for disability a few months back but its terrible the way we are treated. Since I have returned, so I feel like a functioning human, its been merciless. Maybe I should come into work with my pale bruised skin, let down my thinning diminishing hair, and pass out at my desk… that should do it (maybe)

  • jch63

    Well by being on the computer scares me a little because I just got my unfavorable answer from the Judge who was over my disability hearing and one of the reasons I was turned down was that the claiment is able to use a computer and is able to use e-mail, and is active on several social networking sites. (my social networking sites are FB which I rarely get on and a health site where we talk about the ins and outs of having lupus. I have been physically sick for about 5 years and have battled depression and anxiety for at least 20 years. I had a bout with Kidney stones about 8 years ago , I had 30 stones in 3 yrs. I worked in my husbands family business . In 2005 I had a pulmonary embolism with double pneumonia and was in the hospital for38 days which added to my anxiety ,I started having panic attacks that would not stop and was hospitalized for this. My husband divorced after 20 years in 2007 because I was still fighting depression and anxiety and could not make myself leave the house and he had to do everything by hisself and he never understood depression anyway, he was always threatening me if I did not get better today he was going to divorce me. So he did and that just added to every thing. I was finally diagnosed with Major Deppressive disorder ,Bi-Polar, and anxiety disorder, with intermittent aggoraphobia. And was having major back pain and having blood in my urine everytime I went. Then I started swelling and having severe Joint pain with my right knee really giving me problems and so my dr ordered and MRI of my back and my knee and my back revealed 2 tumors one was not a problem but the second was a nerve root tumor which was probably causing all my back pain , so now I’m 3 weeks post op from a Lumbar Decompressive Laminectomy with removal of the tumor which was entangled in many nerves. I was also having a terrible constipation problem for around 3 yrs in which I know this is gross but I spent at least 45 min 3 or 4 times a day in the bathroom WITH GLOVES removing my feces which would not come out and was stuck in my rectum. A Place called MedPay in a town near me contacted me and wanted to help me file for disability , they got my records somehow from the hospital , and they turned me down the first time but I worked with a lawyer the second time and it took nearly 4 years to get an appearance before a judge closed circuit. Theres so much I’m just rambling but the judge said that I was able to have a relationship with my children, and that I could go to my Dr. appointments, and the ER . Now I am sitting here in shock , 3 wks post op, with my bladder that just prolapsed Sunday from my severe straining my Dr. says and am going to have to have another surgery which I am scared to death to be put to sleep, this last surgery was horrific, they could not get my pain under control and my O2 sat up. I am in shock , If I were able I would work . I want to be around people but as I was told by my rheumotoligist ,my lupus Dr. I am in no physical or mental shape to work. I cannot believe I was turned down. Please if anybody has any input please do. Nobody want to be sick or mentally ill. I don’t know what to do. Thankyou,jch63

  • I have heard all the horror stories about getting approved for disability but mine was approved the first time….in 3 weeks (without assistance from an attorney) I know I must be the exception to the rule! I wish I could review what documentation you are submitting! Maybe I could help someone, ! I feel terrible when I read these heartbreaking stories,! I will think positive thoughts for you.

  • Tina

    Someone understands!! Reading
    this and the other comments has me crying for joy. I have
    tried to explain the “Monday thru Friday 5pm Act” to people who just don’t
    understand. I am in the middle of my first disabilty case and after 2 years I finally my first hearing. I hope that you have won your SSDI case by now and if anyone has info about whatt goes on during the hearing and what to expect I would love some info.
    [email protected]

  • brittany

    you have to keep at it.. i was denied a few times until i found this great guy he wasn’t a lawyer he was a Representative who used to work for social security he worked hard and i was finally approved. its not a lot but i manage. i used to loving going to work and having a purpose but i would always end up in the hospital. so don’t give up.

  • I worked with a woman who had Stage 4 breast cancer; her disability claim was approved about three weeks before she died. Guess she was sick enough. I’m afraid to address my own case because of the link to Facebook; I need to find some kind of work to survive.

  • Pain Camp

    I’m so glad you wrote this post Stephanie! I was working in corporate FT, had STD while I went to a chronic pain rehab then came back to work FT again and just couldn’t hack it. I just couldn’t manage FT job and FT life outside of job. That was probably the worst year of my entire 37 year old life. 

    I have a Masters Degree and will have the school loans until I’m 60. I too won’t even bother with applying for disability because I’ve helped fill out SSDI apps before (I’m a social worker) and I know what hell it is. I know all about the requirements for paperwork, additional doctors visits, denials, lawyers, fees etc etc etc. I hated the paperwork for my STD and ADA accommodations at work so much that it was enough to make me run the other direction. 

    Plus, I’m “not sick enough”. I haven’t had a buttload of ER visits (I worked in the insurance industry too so I know how the “high utilizers” are pegged and treated). I am not on a ton of medications (per my choice after chronic pain rehab) and I still cannot work FT where I get paid. I only can work PT and it has to be flexible enough that I can schedule my own hours (Thank God I got a job like this … it is a huge blessing). Thank God I also have a husband that has had to hunker down and take on extra work on top of his FT job just to support the family. My FT job is just focusing on my health. Of course I don’t get paid for that. However, I am able to function better and enjoy my life when I’m living it in better balance. I had to make that hard choice. I decided to quit my FT job (I refused to go on LTD because of all the dang paperwork involved and they expect you to report back weekly to say if you’re going back to work or not). I quit and while it was a huge loss financially and emotionally, I’ve also gained a lot. I’ve re-gained some of my health back (or at least I’m able to manage it better now).I hear your frustration. I admire your honesty. Please try and look at balance, or even ADA accommodations.Thanks for sharing!! 

  • Myth1977

    I’ve never filed for permanent government disability because I know the kind of hell that would be. Took me long enough just to get long term disability from work… I have fibromyalgia and if it were that alone I would not be sick enough, it would suck, but I knew a long time ago I had to adapt and find a workplace I could handle with that illness. I also have chronic migraines and that without effective treatment is hell and impossible to adapt to… but apparently ‘not sick enough’. But eventually also… in too much pain to want to survive under such conditions. That sort of makes the difference. When you put the effort in to fight the good fight and want to hold onto your job, even when you miss too much work and it is a constant struggle, then you appear to be functioning. When you would rather call in dead that suffer that much pain… obviously not functioning. Even then, when clearly suffering from depression associated from pain it still took me two years to try to get long term because I was sure I would be denied again.

  • Patty

    You described everything I am going through right now, except I have not filed for disability because I know I will not be approved.

  • knittern

    I understand exactly how you feel. When I went to my MD about a year ago, I could not walk without it feeling like all the bones in my feet and legs were breaking. He rolled his eyes and snapped, ‘well you can TRY to get disability, but I don’t think that will happen!’ I broke and started crying at that point and said ‘ i don’t want disability, I want to feel better!’ he shut up after that, finally after 14 visit in 6 weeks and ran test so that I could, much to his surprise, join your group! I really did not think that he thought there was anything wrong with me! Thank you to everyone who voices their thoughts, it is nice to know I am not alone…

  • Cathy

    It is true … U must have an attorney ! A bully! Apply and be denied twice. Then the disability lawyers will be ready to go. Yes, our system is BROKE, but from many of us a have learned the ropes….’Tis better to go with the system, and arrive faster! Less sane! But, it’s worth it! Interview the lawyer, as he holds your future in his hands.

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