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.

©2010 butyoudontlooksick.com
  • POlds

    Society is so focused on appearances so we are driven not to appear ill. Other women seem to be our worst critics- so we dress so as to not let them see any flaws or cracks in the facade. I am a 15 year Cancer survivor (Hodgkin’s Disease, I know, not a very popular disease either), who survived that to have years of undiagnosed Migraines and DDD, then finally to have the diagnosis of Lupus and Fibromyalgia. I have worked my tail off for 5 of the last 12 years at the same company to earn a promotion. I will admit that for many years I was not the ideal employee, missed many days (covered by FMLA and Short Term Disability), however, I have truly made up for the absences by learning and becoming a ‘go to’ subject expert- I thought. I just had “the meeting” with my boss explaining to me that I didn’t get the job that I already do, without getting the $, due to not adhering to the schedule and that I am not always seen as approachable. WOW- wonder how those people would feel if they came to work every day feeling like they had been chewed up and spit out?But after telling me how horrible of an employee that I am, to ask me if I am still going to perform the same tasks.. We just keep jumping through the same hoops, don’t we??

  • Mona

    … ‘you can still do your job’ … yes … with tears straming down my face … feeling so hopeless and devastated yet still putting up a smile for anybody who cares to look … laughing with tears in my eyes most of the time … what i could do yesterday i cannot do tomorrow but even better the day after … my roller coaster ride of indescribable pain and uncontrollable emotions is a trip to hell for those that love and care about me …
    … mona …
    (crps for 1 year)

  • http://www.julieg350dayinthelifewithmigraines.com/index.html Julie Schreiber

    I was and am totally in the same shoes as you. I got the temporary disability, sure I was sick enough for that in May 2010. Filed for total disability in Oct 2010 and got denied in May 2011. I filed an appeal after getting a good appeals lawyer who dug up all my medical records dating back several years. I had also been seeing a therapist since 2010 for severe debilitating depression, panic attacts, PTSD, OCD and a slew of other things but the major complaint was daily disabling intractible migrianes with light and smell sensativity and a slew of food sensativities, chronic neck and shoulder pain, visual disturbances. I was and still am a mess. I had suicidal thoughts then and just 2 months ago was hospitalized again. My migraines have not responded to traditional and non traditional therapies. But it took my therapist showing up at my appeals hearing and a change of neurologists in 2010 who was empathic to my plight who also suffers from migraines who wrote a letter to the appeals judge on my behalf stating how disabled I was to finally win my disability case in April 2011.
    I think the biggest problem with the SSD system is that #1 they discriminate against women-honestly they do. And problem #2 these Invisible illnesses like Migraines and such have such stigmas attached to them that no one, even our government and yes some of the medical profession do NOT take them seriously. It took me since 20 years and several doctors later to FINALLY find TWO doctors in 2010 who took me SERIOUS and maked my illness LEGITIMATE and have worked with me and helped me to win my SSD appeal! That is sad and pathetic.
    Do you have a therapist? You should get one and have some sessions and have documentation of your emotional distress and disabilities and that will go a long, long way in your appeal. It’s worth a try. That is what I think helped my case. Finally.

  • Sara

    Yep, I unfortunately relate to all this…what I’ve discovered over past 2 years of trying to get disability is that you do NOT have to be completely not working – but making less than $1000 month, however – to be considered for disability. BUT a friend of mine who was working close to full time DID get his disability through his lawyer/caseworker arguing that he had no choice but to work regardless of his illness. I had to fire my prior attorney and get another one who would actually put time into my disability case, and have few to no doctors who are supportive. We are going ahead anyhow. Disability will automatically be denied for anyone under the age of 50, I was told from several sources. You have to immediately appeal the denials, be denied twice and then immediately appeal for a hearing, and then have a specialized disability lawyer argue your case and present all of your medical documentation. If you are denied again, your lawyer can appeal that one, too, and just keep going until you get a SS hearing judge who will grant it to you. Please don’t work until you land in the hospital. Please, please, please – for you and your children. I know there is no explaining how maddening and completely life-jerking it is to try to get the smallest bit of help. Keep talking to people, keep looking, and have someone drive you to a NEW doctor exactly when you have a really bad episode, when a fresh pair of eyes can see you at your absolute pathetic worst. Let someone new see you, and how it really is for you. God Bless.

  • http://figurethisoneout.wordpress.com Etta

    i love your article. i, too, refuse to give in to the selfish, low self-esteem issues in some that manifests itself in wanting people like us to prove ourselves to them. when i’m home away from people, i can cry, etc. only those who i know truly cares and understands will i and do i share (and i can count them on one-half a hand). and as it turns out do you know what the caring ones usually say? nothing. that’s right…nothing or nothing much anyway. why? i think it’s because they feel it’s not much they can really say so they figure the best thing to do is to just listen. and they do so well. i am so grateful for them. for there are times when we just want to rant isn’t it? i have a friend who hardly asks me how i feel. what she does is she just looks at me with that i-love-you-my-friend look in her eyes. we start talking about whatever and then i just start. she never tires of me. when i’m finished she just says, “ok baby.” that’s it. to some it may not mean much but it means the world to me. i don’t need surmons, vitamin recommendations, etc (i do my own research) just someone who will listen while not judging. sometimes i feel guilty, thinking i’m loading on her so there are many times i don’t mention anything at all. but i know she’s there for me. she too has her illness so yes, we kind of load on each other. we call each other crazy, then laugh and go shopping or something. she’s wonderful!

    now how did i get on this? ok so i’ll stop here. thanks for this site.

  • Merewyn Day

    I’ve just been speaking about this same point. The term disability applies to everyone with a dysfunction yet it is a legal definition that is applied to some and not others. Being sick is not enough and for many with the invisible illness brand of problem, they can struggle to be classified as sick enough to get benefits, yet they can be ill enough to lose all quality of life, employment etc etc. GREAT post. Thanks so much for putting it up.

  • Kathryn

    Wow, I was diagnosed w/Fibromyalgia in 1989. I filed for SSDI because my fulltime job became me and trying to reduce the symptoms so I could get through the day. 23 years later and 100 lbs over weight, survived a suicide attempt, taking enough pills in the time to choke a horse and my symptoms are now in the extreme catagory. Now everything else in my body has its own problems which magnifies the pain in my body to a level that 1-10 pain scale seems absurd to say the least. I now have serious memory imparrement that gets me fired or let go from any job I try. If I could put one of those judges in my body for 5 minutes they would hang themselves before the first 3 minutes were up. If anyone has some helpful advice I am open to any at this point.

  • vicki

    Thank you !!!

    I’m currently playing the game on the medical roundabout, (17 years and counting)and no wonder we we have depression.
    I have to agree, i would dearly love yo see just ONE health professionalism live our life for just one month, I bet things would change then don’t you ?
    Didn’t these people go into this profession to try to help people?
    You know what they say, what do you call a student of medicine with the lowest score…. a doctor !!!

    God bless and keep up the fight.

  • babs mason

    i feel so bad for those who cannot get dissability who need it. we live in an unfair broken world. i feel guilty for being on disablity; so thank you for saying we deserve it when we are sick. would give anything in the world to be able to work. unfortunately i would be penalized, loss insurance and end up on street in cardboard box. there was a time when i could of worked parttime, but that time is gone. i will keep in my prayers those who need the help who are not getting it. does anyone know how to get help with dental? my teeth are literally falling out and have not dental insurance and no money to take care of it.

  • http://www.facebook.com/jo.folini Jo Folini

    IV BEEN IN A CHRONIC DEPPRESSIVE MOODS 4 13 YEARS…….N NOW IM SHOCKED AT THE FACT;I HAVE FM;NOT ENUOGH BENEFITS TO EVEN OUT;WHAT THE STATE HAS NOT IN STORE.;MLT;P

  • Raven_grey2005

    It took me 17yrs.(October 2009) for me to even get the SLE Dx I knew I had but no one else seemed too. In 1994 I was given long-term disability only after I threatened suicide on the phone with the Social Security Office and then also got my then State Senator involved.

    A person has to wonder why they even offer disability benefits in this country when all the government does time and time again, is deny them and therefore deny the fact that people are too sick to work; especially if They Dont Look Sick!

  • Twobings

    Very well written. It’s such the life to throw all of our energy into work to avoid 

    “that firing thing” only to pay the ultimate price of having no energy and probably becoming seriously sick when we get home or on the weekends. This is not an understatement people.  Lupus and other chronic hidden illnesses are no joke. Our disease changes day by day and sometimes minute by minute.

  • Allismack311

    @Equilibrium8.. Odd name for someone who
    doesn’t see the whole picture….I am proud of my RIGHT as an American to have freedom of speech; unlike you I don’t speak about that which I have NOT PERSONALLY EXPERIENCED. Be careful, the fall from atop your high horse might lead to an injury that can’t be cured & unsympathetic, well informed folks like yourself will be unwilling to help you. Glad to hear your superhuman though.
    Allisin

  • Karenlu1

    So sorry Stephanie. That dr. Should have to live just one day in your shoes. Then he’d be on your side. He makes me so mad not to support you. Who does he think he is, God?

  • Dela-where

    To Equalibrium8 – I’ve worked with PICC lines, pulmonary aspergilosis and pseudomonas. I’ve driven to work chanting out loud, “I will not fall asleep.” Too sick to work- YES. There anyway because I’m the single head of household with a mortgage and car payments. I have had two rounds of short term disability and each time I was deathly ill. The best part- everyone thought I was faking….. To quote a friend…I know how to suck it up until I turn inside out!

  • redhairedcrazywoman

    To Equalibrium8 Just because you go to work does not mean you are too sick to work. When working full time means the rest of your life is worthless and your health is adversely affected, then you are disabled. I could go to work full time but my Doctors would not allow it. Why, because the stress of even an office job is liable to put me in the hospital. Just because you can do something doesn’t mean you should. Obviously her working full time is killing her, not to mention not allowing her to have any kind of life. 

  • Holly07

    I agree. I work to provide health, dental and vision insurance to my husband and his 4 children – who are not mine and whose mother scams the welfare system to get assistance even though SHE works. I work to pay off my $100,000+ in student loans that were accumulated before I became sick. I work to provide some sense of normalcy and routine to my life. But, I also am absent ALOT. I have missed this entire week due to symptoms and a flare up. I have already used my allotted vacation, sick, and personal time for the year. When I miss work now, I don’t get paid and risk losing my job, but honestly, that is a risk I take when I feel like somebody is standing on my hands with football cleats or has jammed hot pokers into my hips and I can’t sit at my computer at work.

  • Coll1202

    When the alternative is living in a cardboard box, your body finds a way to get to work everyday. You shouldn’t belittle someone else’s situation just because they are strong enough to push thru to survive.

  • Jules

    That’s very sad. I’ve had way too many experiences with cancer and coming in at Stage 4 a few times…how dare “they” and who are “they”? Disability? I really find it hard to believe that anyone would tell a person with Stage 4 cancer they are well enough to go back to work.  No they are not, from what I’ve witnessed and taken care of, ever gonna be well enough to go back to work and I bet if you asked them “if you had Stage 4 cancer and actually WERE “able” to work, how would YOU rather spend your time? worrying about working (which I can guarantee will not work) or spending and cherishing as much time with family and loved ones as possible?”

  • Jules

    Would you mind sending me info on the attorney you retained please? Thank you and best of luck to YOU!

  • Equilibrium8

    I’m not being funny but if you wasn’t fit to work, you physically wouldnt get there every single day because your body wouldn’t let you.. If I tried to work, after one day my body would collaps with weakness and in agonising pain that I couldn’t even walk a single step.. I think that’s probably why u are denied dla.

  • sandra davis

    All of this and more ,I have experienced ,from PEOPLE,friends,family ,Jobs,I suggest.that anyone going through ,just keep the faith know that God oly know and understand,eventually it work out….

  • Not just M.E.

    So true, were you in my head when you wrote this?

  • http://www.facebook.com/cathy.d.prentice Cathy Dawn Prentice

    I understand the whole cycle…. when I got fired in January, again due to absenteeism, I finally gave in and applied…. denied in April, went thru a wonderful atty in May and got qualified in June… the hardest part right now is i won’t see my first check until mid-August and we are down to the fingernails on paying bills… but, I haven’t worked a 40hr wk in 3 yrs…  I have had RA for 29 yrs and SLE for 13.. and my immune system is to the point that if I am out in the public very much, I get sick,miss work, get fired…

  • RC

    I know the feeling. Have stage 4 cancer been disable the last 4 years now they say i well enough and can go back to work. Like you say i look well on the outside but the side effects of all my medications take a toll on my system. You never recover from stage 4 cancer you will always have cancer. To top it off also a diabetic now.

  • R. Stapley

    I feel you’re pain. I’ve been disabled 19 years. It’s a game they play and they hold nearly ALL the cards. It’s wrong bet true. Wish I could talk directly, call several Erisa/ disability attorneys. Get a feel for what they charge and how good they are. DON’T fill-out the insurance forms(& especially appeals) unless the attorney approves it!!!! This is a terrible area of law leaving you with almost Zero rights. I’be been disabled almost 20 years, you’be got to find a way to do this. Also, make and keep meticulous files and journals. You’ll need them. Watch and read you-tube videos on the subject. Try not to be scared or discouraged by what you may here. I’t is double, but will become your new part-time job.

  • Paige

    My name is Paige, mother of four girls, military wife, two grandchildren. I am 47. I spent 21years in the medical business, 11 as a respiratory therapist, 10 years assisting in all surgeries. I loved my job! I can’t hardly imagine I will never help bring a baby into this world or hold the hand of a lonely man in the last few hours of his life. I am suffering, and I do mean suffer, from Celiac disease, uncontroled Chrohns, Lupus anti coagulation inhibitor(means Lupus of the blood I make blood clots), Graves disease, high blood pressure, surprise surprise I am diagnosed depression and anxiety. I take 13 pills in the am and around 20 in the evening, lovenox inj twice a day, every day and pray for no more clots but not start bleeding out from thr Chrohns. Also two other injs. Monthly. This is just to get through a day and that is not working. I mean really, do you want me to help do your surgery this way? I didn’t think so. But that was my passion, now it is gone. I try to help my husband outside, sick in bed for three days. I am not sick enough…. If only the ones who hold the NO stamp, could live one week in my life…aren’t they lucky they don’t have to.

  • http://momentarysolutions.wordpress.com/ Tanya

    It broke my heart to read this because I can relate to it so much. I have forsaken the rest of my life to be able to work 12-16 hours a week, if I can go to work at all, because I need the money. I can’t live without it. But what it takes to earn it means that in the times in between being at the office, I barely live at all. But hey, I’m fine, apparently. Not in need of any support or help, financial or otherwise, thank you very much UK government. Lucky me!

  • Teresa

    I could not have said it better.  Thank you for putting my feelings/fears into words.

  • snooch

    I got my SSD automatically because I have terminal cancer….the only benefit to being told you are going to die! The system sucks for anyone else…..my advice, get a lawyer right away thru a disability services free legal clinic..they exist!

    Good luck to all.

  • snooch

    Get another doctor and fire Dr. HINEY!

  • Latoya T White

    Hi readers! My name is La Toya White. I have just been diagnosed with lupus less than two weeks ago. Honestly, I am so afraid! sad thing is that, I reside in SC. I have no insurence and have to travel to the next state over in order to get; HELP, ANSWERS,MEDICATION, ETC. I work hard, and am a proud mother of two. That alone means that I HAVE TO LIVE!! I am honestly ashammed to claim SC for thier lack of support of peoples illness. Easpecially for people with illnesses such as myself whom work and pay into the system. The only information that I have on Lupus would be that of that of the information inwhich I recieve online. Really sad in my opinion! In closing, to Stephanie, I am so sorry that ”WE” have to work hard under the circumstances of being internally ill. We may need to campaign nationally in order for our ”struggle/voices/pain” to be heard and understood. SC informed me, when I went to file for disability, ” AS LONG AS YOU CAN AND ARE WORKING, YOU WILL NOT BE ABLE TO FILE”. So I continue to work will in pain, because the bills don’t understand that I am to sick to work. One day we will get our respect. Until then, we just keep our heads up and pray.  

  • Stacey Sanders

    I wonder if your Dr. Headupmyownhiney is in the same network as my providers, Dr. Useless and his associate, Nurse Imalwaysatlunch. Cheers (this is where a sarcasm font would be uber-helpful) to those people of the outside word, the ER, the urgent care, the various diagnostic facilities, and whomever else I forgot for dropping fun terms like “lazy,” “prescription pill seeker,” “only depressed,” “sunlight deprived” (because I live on the coast), and “overlydramatic,”  for 5 years.  And thanks for the various remedies I could try that they have heard JUST WONDERFUL things about – going gluten free, acupuncture…although my personal favorite had to be ballet. I feel like garbage, but let me put a tutu on and I know that will just pick my spirits RIGHT up! Now, after all that and being given a diagnosis of fibromyalgia, being told that it’s not really a disease and I should just suck it up. All you do is hurt, right? 

  • Jeanne Rhode

    I am currently in the land of the disability application process.  I have been denied by Social Security, but I have appealed..  so we will see.   I am confused as to how this all works.  I have worked since I was 15 years old. I am now 52, living in a small one bedroom apartment subsidized by the city.  no medical insurance has torn into what little savings I have had and now I start the lovely process of getting the Social Security that  I have been paying into since 1975.

    The Department of Human Services has denied me but now they have deemed me unable to perform even unskilled labor (what an ego boost with that), so reversed the decision and I am getting retroactive Medicaid and SDA?   I was told this is not a guarantee that I would get my disability.  I have unemployment due to me but they called me and told me that I could not collect it because of the disability application. 

    I have braced myself for a tough time but pray for all those people going through this if you have any words of wisdom to share please do.  I have found strength in prayer and faith in God that can get me through it.

  • tina aka forrestina vintage

    Looks can be deceiving.  Sad part is it’s not just the doctors that won’t give support. Relatives can be so ignorant and uncaring.  Asking the same stupid questions over and over, “So what exactly is wrong with you?”, “So when are you going to get a real job?”, “When are you going to finish school and why don’t you just go full time and get it done?”, “Why don’t you get your driver’s license so you don’t have to have other people help you to doctor appointments?”.  Then there’s the ongoing, unsolicited advice…”Have you tried a non-dairy/vegan/gluten-free/insert-whatever-is -hot-at-the-moment type diet?”, “Have you tried acupuncture/yoga/hot yoga/etc yet?”  And, yes, I have tried all that last group…doesn’t work for my issues.  I don’t LOOK like I have physical issues because they can’t SEE Musculoskeletal Disorders,, they can’t see tilted pelvis when it happens, they can’t see IT band syndrome and they can’t see my symptoms of hypo-thyroidism and since I am thinner than all of them it’s not worth mentioning that I’ve gained 20 pounds in 5 short years.  It is not always possible to see someone’s depression and bouts of severe discouragement that go along with these conditions; many just from living with the pain, scratching to earn enough to pay cash for treatments since we are uninsured, and worrying about if something happens and we can’t pay for it.  I’m just thankful I have a loving, supportive, encouraging spouse and that I have my faith or I would have given in long ago.  Best regards and prayers for solutions to the author of this post and to all those that commented.

  • Susan

    I hope you all find help in getting diability. I was one of the “lucky ones” with my Myasthenia Gravis. I had a doctor that immediately recognized the symptoms because his friends wife had it. I was diagnosed and sent for the ‘smoking gun’ they all talk about before you can get disability. A year later when I applied for the disability I had to go to SLC, UT and get a single fiber EMG and it showed both normal and abnormal side by side. So All I had to do was meet with a doctor from the Disability board and it was done. Look for others of your diseases who can give you suggestions and for all of you who are suffering with what ever you have for your Disability, please know that there is someone out there who does wish you to have a good day and as little pain and suffering as possible. It is not fair, we did not ask for this, but it is up to us what our attitude will be. I hope you will choose to stand strong to the end, with grace and dignity. To show others that we can endure to the end. That there is a way to go through these trials in our lives and have a positive attitude! Good luck and God bless all of you! May your journey be as light as possible!

  • Debe_999

    Yes horribly familiar.  I am no longer able to work full time, but proving that is impossible particularly with my own “Dr. HeadUpMyOwnHiney”.  It has taken me over a year to get a x-ray agreed.  This showed up problems with my cervical vertebra which explain the symtoms I’ve been speaking to my ‘Dr’ about for over 6 years.  I can’t fight for treatment AND work even if it is only part time. 

    The only solution I can see is to arrange a humane end to the whole thing.  I am in the process of doing that now as my life is currently one long round of getting through the next hour, while knowing it can come crashing down again in a moment.  I’ve already lost my home, came very close to being completely homeless (i.e. no roof mine or otherwise) a little while ago and I can’t deal with the notion of dying that way, which I most certainly would do.  My existance right now is simply one long pointless round of researching my condition in order to get some sort of ease.  It really is far too much effort just to maintain a pulse.

  • Jen Bourne

    Oh, I so know that feeling, I have only begun my fight for disability–only because at this point I absolutely cannot work. If I dis manage to make it out of bed at a decent hour, the drive would kill me and well, you know… I put off this struggle for years because I know what my chances are. But I want to help support my family–so I fight. Not sure how long I will have the energy to fight but I will fight until I can’t….

  • Acengland85

    I understand your frustration. I struggled for years, until a hospital stay finally broke my resolve and I gave up. I filed for bankruptcy, moved back in with my parents, and because I gave up TRYING to work, I was approved for disability. Is it fair? No. But I can honestly say that for all the years of working through and around my problems, being the strong one, when I finally just emotionally couldn’t do it anymore, things started to happen. I started getting state benefits and my disability was approved 6 months later. I’m lucky because I was single, but how could you do that with kids to support? I hope things eventually work out for you.

    Sometimes you CAN’T do something you’ve been doing. If work is something you just can’t do, then letting that wall down, crying in front of the doctor, letting him see you in pain and agony and frustration and defeat, may be what you need to do. I’m not saying act, but don’t act HEALTHY any more than you act sick. I had serious pride issues and it wasn’t until a humiliating hospital stay (that forced me to drop out of college, abandon my apartment, and lose my car) that I could finally stop putting up the “strong woman” front.

    Good luck to you.

  • Shanna Balcazar

    I’m on year two of filing for disability. I lost my job due to my lupus and fibro. notheing is working. I understand that I’m thirty-two and don’t look sick however. I can’t work and it’s really hard trying to live day to day. I wish I could work. It would definately help my marriage and family life if I could.

  • Bella

    I hear your pain, and I do have disability,BUT,the sad truth is that,to qualify for social security disability, the first, and foremost, qualification, is that you cannot be working. It is unfair and unjust,yes, but you will NEVER be able to qualify if you continue to try to work,regardless of how ill you really are.Most doctors will not participate in litigation unless forced, and you don’t want a forced testimony.I tried for years to continue to work and only got fired for my efforts,after years of no absences, because I HAD to call in sick during the last year of my employment. I was single with 3 children to support. I qualified for disability the first time around,with no lawyer and with no further questions asked after filling out the applications, simply because I was no longer working and could not have work had I dragged myself on all fours to work and laid on the desk…it is unfortunate that that is what it takes but it does. I thought the world would end and my children would wither away if I did not work,but,though it came close, it did not. I did,however, lose every material possession I had,including my home and my vehicle and I had to farm my child out to family and friends temporarily,but,years later, I am so glad that I did it (like I had a choice). Now,11 years after that horrific year, I am stronger and feel better than I have since my early 20′s before my diagnosis (lupus).I still have lupus and have had many close calls, but,though I am in no way well to do, I am better because I no longer face the pressure of trying to work a job I cannot perform the way it should be.My mental health is infinitely better and I now appreciate life,rather than dreading it. My children did not wither away,though they complained a lot.They grew up,got married and one has his own child. My youngest is 18 and a young women. We went through TERRIBLE times but we learned that possessions were not that important and that a life can be rebuilt and go on. Think about it and I hope you can go on, as I have. The way things are now, you will soon not want to live. Something has to change.

  • Holly

    What happens if all I can get is SSI? IC hit me at 19. I never had a chance to work. Plan was to use scholarships to rush through school then work. Plan backfired.

  • http://www.theamericancollege.edu/ Retirement Planning Courses

    Thank you so much for this post! So many people I know have been through similar situations, and it is good to see what others re doing for similar causes. Keep us posted!

  • Kathleen

    Sunny your post is the best,accurate advice as far as trying to get disability..I went thru the same damn crap trying to get Workers Comp in NY-my case dragged on from 1990-2003 until I finally got my status of “permanent partial disability”-I still have to fight for every type of medical necessity-they always say no & now no MD or healthcare facility will even let me in the door w/o a written authorization-It would be easier getting invited to the White House for dinner than playing this damn game-I did get my SS Disability in 2003-I used an attorney + when I made an appt w/SS-I showed up in person instead of doing over the phone-I always look like I feel-my pyschiatrist told me that’s very important when dealing w/any type of face-face IME’s,etc.-get copies of all your medical reports,scans,etc..helps you & your attorney-YOU MUST GET A LAWYER WHEN APPLYING/GOING THRU WC OR SS DISABILITY-they charge a small fee that comes out of any $ judgement you receive-usually about $100 on LI,NY-Basically this becomes a “job” w/in itself until you get what you need & having a lawyer DOES MAKE A BIG DIFFERENCE!! Remember every paycheck YOU PAID YOUR FICA-DON’T GIVE UP!! I know it’s very hard on you mentally/physically-persistance will pay off-THEY WANT YOU TO GIVE UP!! Sorry so long but I just wanted to give my fellow “pain sufferers” some advice/tips that I wish I had when I started this @ 22 y/o!! Good luck & keep me/us posted on your journey.

  • http://sunniejos@aol.com Sunnie Sargent

    I can totally relate to ALL of the comments. After reading the article and comments I feel so lucky. I have what they call Mixed Connective Tissue Disease, which basically means that there are so many things wrong with my auto-immune system that they don’t know what to treat first as far as I can figure. This includes SLE, MS, Fibro, Sejourn’s Syndrome, CREST, Mitro-valve prolapse, Congestive Hert Failure (from some idiot doctor that put me on a sulfa based medication which cause 3 heart attack and severe breathing difficulty landing me in the hospital for 30 days). More recently diabetes, kidney function at 45%, liver function at 45% (thank you meds) Hypertension. I applied for SSDI on my own after the initial diagnosis of SLE and Fibro, I used no attorney, no rep., no agent in any form. I filed the paperwork on my own submitting my doctors report/letter from my Rheumy. I was then contacted by the SSDI by letter informing me that an appointment had been scheduled with a doctor of their choice for an exam. I went to the appointment, as noted above, looking as bad as I feel on my “bad” days with help from my husband assisting me into the exam room, standing up to help when I had to walk because my balance is a big issue and being there with me because I was “to sick to do it on my own”. I agree, if you continually show up to appts. with your “good” face on, you lead them to believing your not as sick as you really are. Following the appt. the SSDI office scheduled for me, I eventually received an approval letter. This process took over 20 months. I did receive back pay to the date of filing. All I can say is that you need to stick with it. As sick as you feel YOU are your best advocate because only YOU know just how bad you feel. If you have to look like you feel to accomplish this task then so be it, really are you ever going to see the people passing in the cars as you go to the appts.ever again? Does anyone in the waiting room matter to you as much as getting approved? In reality, I’ve found that when I actually look like I feel, people are kinder to me a bit more helpful, don’t give me that “look” when I’m somewhere and have to go lay down etc. One of the secrets to filing for SSDI is that you have to apply within 10 years of no longer being able to work. I filed just prior to the deadline. If you wait past that point and haven’t filed, they act like “you haven’t worked this long with no assistance you can keep on doing it!” So don’t let yourself feel that you have to “get ready” for an appt. Just go like you feel. It worked for me. Hopefully it will help some of you.

    Good luck to all and I wish you the best, Sunnie

  • Beth

    I lost my job due to my chronic migraine and panic attacks. I had intermittent family medical leave for ten years. I used one or two days a month when I was too sick to come in and not safe to care for patients. I never abused it, but this pissed off the bigwigs at my job. So, they made up some fake crap with fake witnesses who never came forward to terminated me and end my career. I am just a litttle bitter. I had been told my friends, NOT my family, that I should apply for disability, but I love my job and honestly I was only intermittently sick. Now, however, the hellish job I finally landed has driven my migraines to a whole new level. I am praying as I search for something new, that once I leave I will get some relief because how can I support a family of 4 on disability? Someone tell me how? How?