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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  • Lynne Bruner

    I have not applied for disability but I do suffer from “drag your arse to work syndrome” I don’t cook, clean or do anything around the house except on rare occasions. I try and hold things together at work but sometimes it is OBVIOUS because of the brain fog! especially when you are trying to lecture!

  • Jen

    I’m so sorry to hear what you and so many others are going through. The system stinks!! I was always employeed in the mental health field and knew how awful it was to navigate said system. I had clients who were forever “spending down.” It seemed horrible to buy someone fancy clothes or an expensive TV so that they can continue to receive benefits. What about the portion of medical care not covered by government assistance? They’ve been so busy keeping their assests under $1K that they could not have funds to cover substantial medical bills. I was always on the phone with this agency or that, often to no avail.

    Then I found myself in the system…

    My doctor was absolutely incredible when I went on short-term, then long-term disability, through my employer. The last day I worked was the day before I was first admitted to the hospital. My ST and LT were approved, with little question, if memory serves (I went out of work 11/3/00). At that time it was for depression. My long-term disability insurance provided me (at no additional cost…) someone who called and asked me countless questions. He then filled out the SSDI form, knowing the right wordage to get the claim approved. The LT company was motivated to get me off of their funds as soon as possible.

    People with mental health diagnoses are consistently denied benefits. As someone said earlier, there is no physical evidence. There aren’t bloodtests or MRIs, etc to offer proof of the diagnosis (as is common with so many of our ailments). I fully expected to be denied at least once and was shocked when the approval came through. By the time I was applying, I had multiple hospitalizations totaling over a month (I believe – the time frame is fuzzy). My psychologist continues to be incredible at relaying the facts of my disability whe reviews come up. I am blessed to have continued my SSDI, and later Medicare consistently. I was required to see one of “their” psychiatrists, but was evidently pitiful and pathetic enough (depression-wise) to be, it seems, depressed “enough.”

    Since leaving work, my mental health diagnosis has been changed to bipolar II. I also have severe anxiety and have had agoraphobia for the past 3 yrs. I have had a head trauma from one of the meds causing me to fall – often – and in the tub (that was the one that did it). I have been diagnosed with arthritis and fibro. It was discovered that I had a stroke (sometime after the hospitalization for the head trauma, since those scans were clear). When trying to figure out the cause for the stroke, I was sent to every -ologist under the sun. With the exception of the cardiologist, every other doctor found something diagnosible, but still not a reason for the stroke.

    My benefits cover my care. Period. I see a psychologist weekly, my neurologist and psychitrist every 1-3 months. I am on over a dozen meds. I have begun massage therapy… not covered by insurance, of course.

    I am so blessed that I have a husband who is employed or I’d be sunk! My meds are covered on his insurance so I don’t have to pay for Part D. Here’s a kick in the butt…. he was recently diagnosed with cardiomyopathy, with his heart pumping at 10% (normal is considered 60%). He had to wear an external defibrillator for 3 months following the hospitalization when he was diagnosed. That cost $3200 and insurance considered it DMI, so only paid for 50%!!! He has since had an ICD placed, though that is precautionary and has no effect on his condition. He is now taking multiple meds (oh, a shout-out to the insurance companies for screwing us with co-pays) and we are seeing a heart failure/transplant doctor at a large university. He *will* go into CHF if he misses a diuretic. He may have sleep apnea (the transplant doc ordered a study), so it’s possible a C-PAP is in our future (no doubt considered DMI, so only covered 50% – they’ll do anything to slither out of paying. Fortunately he’s been able to work since his job is sedentary, but should he go on disability, we WILL lose our house. If he isn’t approved… well, my entire check is taken up by my care, so – I can’t bear to think about it.

    I’m sure most of you are running into similar issues: med interactions! I could not be prescribed anything for the fibro because I’m already on some of the meds for migraines (let’s not forget them) or they can’t be combined with one of my bazillion medications. So, thanks for that diagnosis and “see ya.”

    I am saddened by the state of the system which is in place to help those who cannot work! I’d like to see anyone of those docs in their cushy offices walk one day in any of our shoes! They’d change their mind right quick!!! I wish I could work. I’d rather work than be sitting here in pain. Has anyone else had someone say “you’re lucky not having to work.” LUCKY? I’d switch with them in a heartbeat. Here, take my pain and brain and I’ll be a productive member of society! For everyone here who has to suffer with both, God bless you because it’s the hardest thing anyone can do!

    Forgive my extensive repsonse… I am frustrated for everyone, hope to offer something positive (having rec’d specialized help in getting me approved, though I don’t know the “title” of the person who made it work) and I appreciate you reading my story. I am limited to my psychologist to listen to me. Something tells me you can relate to losing friends due to your illnesses. So, again, thank you!

  • Carly (M)

    Steph,
    I just posted this response to RA Warrior’s blog on 3/19/11:

    Most people with chronic illness go through life downplaying their symptoms to others and to themselves, as a survival mechanism. You often have to push aside the pain, depression, frustration, fear, etc. You have to find tricks, or shortcuts, or new standards. Most people have to work in order to have health insurance and feel pressured to misrepresent their condition in order to get hired (you don’t have to say anything in an interview, but you do have to speak up if you need to request ADA accommodations), to stay hired (it’s not always legal, but lots of companies find loopholes to fire people), or to get promotions.

    I think the disability process exploits these traits. It can also be very tough emotionally to really sit down with a bunch of paperwork and explain in detail ALL the difficulties you are dealing with.

    I live in fear of one day having no choice but to apply for disability. I hope that day never comes, just like I’m sure every legitimately ill person wishes the same for themselves.

    My heart goes out to you all, either dealing with the process, or dreading it.”

  • susan smith

    Wow, everyone has a story, and no two are the same. I was thankfully granted SS disabilty two months ago after a 2.5 year fight. You would not believe the way I dressed to go to my dr. appointments and to the hearing. I looked so bad I scared myself. lol I guess it worked. There is NO way of understanding how we people living with invisible illness’ exist. I think the whole process is a mess, and to put people that are so sick thru this, well, shame on them. I pray that you get your so deserved disability. The only good thing about receiving it was that i finally felt “vindicated” in the eyes of these aholes and naysayers. To know that you most probably will not be able to work, make good money and better yourself is a horrible position to be in. If they could only walk in our shoes for just one day…just one day!

  • Barb

    Sending cyber hugs your way. Been through that all with my son and the answer is always NO. I came at the problem from a different perspective. I was turned down many times for unemployment when my son’s medical problems prevented me from working full or even part time. We couldn’t even get a handicap parking placard for him. So every time he had another EDS related injury or surgery we would head to the local police station where they would issue a temp placard. Eventually they got sick of seeing me there, and they suggested we apply for a permanent one. The state of NJ turned us down four times.

    As an adult now, he works full time. Thankfully he has the education and aptitude for a good desk job. There is no way he could handle a job that required any physical labor, or even a job that required standing for more than a few minutes at a time. But there are many nights when just sitting in a chair all day means that he can’t move when he gets home. He found a program and trained his computer to respond to voice, because some days the arthritis in his hands is unbearable. He’ll continue to work full time so he can keep his health insurance. He’ll continue to struggle walking from his car into work/a store/wherever because NJ still denies him a parking placard.

  • Vikki L.

    I totally related. My butthead rheumatologist seems to think he’s being helpful when he tells me I’m not as bad off as his other patients. Gee, thanks. No, really, I’m glad to hear that. But can he actually treat me for what *is* wrong with me??? 🙁

  • shelly

    I am in your spot. Kind of. I don’t have an official diagnosis. I have already bankrupted my family once & because of it we-my husband 3children & I were homeless. I have recently gotten much worse & now have less insurance coverage than I did before. So Ir cannot afford to find out what my real problem is..Doctors that tell you this is the the best youc’ll ever be but don’t actually make sure a 17 year old understands what they are being told just sends them on their way should be shot. I did not believe that dr. I refused to be listed as disabled. A mistake I have paid for for the last 14 years. Now that I can barely function I cannot get anyone to listen or help because I am underinsured in America. I am often completely dismissed as a junkie or wussing out or am a hypochondriac. I am frustrsted & broken & I know that my family pays the price daily. My children have responsibilities they shouldn’t because I can’t do it myself. If I could go back to that moment when I was 17 I would do it all over & my children could still fully be children. I could have help now when I need it so much more. But yep, I LOOK GREAT & see how much weight I’ve lost!!!

  • Teri Kennedy

    Kristi did a good job with the facts!! I was about to say you can’t be working when you are applying….and then I saw her long factual info. It is interesting to me how every one’s experience is so different. My doctors (8 specialists) begged me to stop working and then I finally got so sick it was dangerous for me and for my patients (I was passing meds ) I was an RN and my memory was messed up from chemo brain. Some of us are fortunate to have a life partner w/ health benefits however, there are many single people that don’t. You have to eat and put a roof over your head so how can you stop working? If you have a kid or two you get some help. If you have none you’re screwed. I do not know what the answer is but it is an embarrassment to this country that we can’t take care of our sick and disabled. I also had used a disability attorny, best thing I ever did. And yes, most people get denied on the first claim. Your rheumatologist sounds more like a proctologist, maybe you need a different opinion (Rheumatologist).

  • Jacki

    In tears, from the fear…Knowing that I too will be turned down yet another time. Last meeting with SSI I got up to go to the restroom 3 times. I suffer from Crohns, Type 1 Diabetic, plus a whole host of other problems caused from the medications. Yes Im getting depressed. Maybe that is the card I should play next. My illness has put my family in a medical financial crisis. Yet, there is money available for yet another war?

  • Its the same in the UK as regards disability. We all jump through all the hoops that the government put in front of us to stop us claiming and still we don’t qualify for disability benefits! Just like Stephanie I put on a front outside the house, only my husband, bless him, knows the real me. Maybe we should all stop being heroes, give in, get in our wheelchairs and claim and receive disability benefits that way!

  • Bobbie (@bobbie629)

    Steph, this article really hits home for me. I’ve been a hard working productive member of society until I couldn’t anymore (recently). I do what I can to keep my appearance up because it helps keep the depression to a minimum. It’s a never ending battle. I am battling for disability, we have craptastic insurance and over 40% of the monthly income goes to my meds and health bills. It’s wearing us down, but what other choice are we given? Yet if I was an alcoholic or crack addict who couldn’t stay in rehab because my addiction was SO strong (in my state) I would never have been denied disability, even if I had never worked a day in my life!

  • Nann

    I’ve been told time and again NOT to talk about what you can do when applying for disability but rather to talk about the things you no longer can do, even the seemingly little things. If you’ve not been doing so, talk about being unable to do any of the things required for a tolerable family life, including specifics such as those above. And disability hearing and doctor visits are the times you should let yourself look the way you feel. Even if you don’t want to let your dress or personal care go for it, if you let the fatigue and pain show instead of covering your case will be more convincing.

    And find a slick disability layer if you can! My husband’s uncle was an SS judge for years and after driving his wife nuts post-retirement, start disability lawyering. He knows the system so well he doesn’t lose!

  • Debbie S

    This article is an example of what’s wrong with our system. According to the Americans with Disabilities Act a drug addict or an alcoholic can draw disablity due to their dependency issues but the rest of us have to suck it up and move on because “we’re not sick enough”. How sick is sick enough is what I’d like to determine…
    Last February 2010, I caught the swine flu from one of my students….from that point on I felt like someone had dropped me off of the Empire State Building, I was losing my hair, was so tired that I have to take a nap EVERY day…Then I got lucky and began having intense heat driving through my body, kind of like the heat you feel when you get a CT Scan and they inject you with dye times 100 which was followed by 24hrs of my skin feeling like it had seabreeze on it… all over…my palms of my hands started peeling, I went to the ER and Doctor no less than 20 times in February. I couldn’t think right, I couldn’t say what I was thinking, the words sometimes were replaced with similiar words etc etc… Being a student was very difficult because I would have to check the article I wrote for incorrect words that spell check does NOT pick up.
    In March I went to a Neurologist who told me there was nothing wrong with me that I needed a psychiatrist. I was told by my family to try a Rheumatologist, so I did….I was diagnosed with Lupus and Fibromyalgia…finally a diagnosis I thought! I never seemed to get any better though…I used Lyrica and Plaquenil.
    Finally in June I was so sick I went back to the hospital to find out I had diverticulitis with a 9×6 cm abcess… I spent 15 days in the hospital…
    In September I ended up in the hospital again and had a minor surgery. In December I had surgery to have 8 inches of my colon removed. Joy Joy! I have finally figured out that I suffer from panic/anxiety attacks….the symptom I have is the heat flare ups..
    So now that I figured that out and the correlation between attacks, the fog, the fatigue, the continuous pain, aches, and the swelling etc etc I am not eligible for long term disability as I am not sick enough. I did receive short term disability without any problem….but evidently when you roll over from short to long term their definition of sick differs.
    You pay an arm and a leg and literally your azz for disability and still can’t get it…I told the man I was speaking to at the from the LTD insurance company, I could send him my colon for proof if he’d like me to…he said no thanks…lol Go figure….
    Unfortunately I can’t teach the population I teach(Exceptional Student Education) because I feel like Ive been run over every day, I would have to crawl under my desk to take a nap, and while I was doing that my students would probably shoot staples at me. They have behavioral issues to put it mildly. Until I can come back and perform my job 100% I can’t go back. This kind of defeats the purpose of working on my Doctorate…but I continue on.
    Disability is a joke; I haven’t even tried to apply for SSDI at this point… I’ve been diagnosed with undifferentiated connective tissue disorder and fibromyalgia…you never realize how important your health is until you’re no longer healthy!

  • I know exactly how you feel. Not, I’m sure, that it’s any consolation.

    In the space of just over a year, in the mid eighties, I went from a super-fit (albeit with poor lung function), and active backpacker to a wheelchair jockey, wiped out by agonising pain in my joints, muscles and bones. But I didn’t look ill.

    I was still well-muscled, and I can pick up a tan waiting for a bus (seriously), and I met with flat disbelief – for ten years. Eventually, I got a diagnosis of CFS (ME here in the UK). I think it’s wrong, but at least it got me taken seriously – more or less, though it took an additional decade or so to get adequate analgesia.

    I’ve had my disability benefits since 1986 (I’ve had asthma and bronchiectasis since age 2, even though I remained active – I had stamina but no speed), and my new but still undiagnosed condition, added to that, simply wiped me out, so much so that the medical examination for my benefits put me in bed for days.

    In January this year I was diagnosed with advanced heart failure and, unbelievably, I’m getting the not sick enough/don’t look sick crap all over again. More seriously, I’m not getting the meds I need either.

    The answer? Right now, I don’t have the faintest idea, but I’m beginning to understand why violence against medical staff is a growing problem . . .

    Eventually, via my blog, I began offering advice to others, helping them maximise their benefit claims (not helping them to work the system, of which I have been accused), as even the form of words used can work for or against a successful claim.

    Eventually, though, I was so overwhelmed, emotionally and physically, with other peoples’ problems, and my own, that I just had to quit. The way things are, whatever time I have left I want for myself, though all the information I have amassed, and advice I’ve given is still there for those willing to look.

  • Cynthia Hackney

    Don’t give up. Keep on appealing the long term disablity. If you haven’t done so file for SS disablity. I kept on fighting for my long term disablity for over 1yr. I finally have won my reapple. The clincher is when they found arthritus to add to the fibromyalgia, and chronic fatigue. I have had 2 rounds of hip injections, back and neck. I feel your pain. I live 1 day at a time. I look forward to going to sleep at night and then awake the next day in chronic pain all over again. It never stops. I have bad days and then worse days. There are no longer any pain free days or minutes in the day. I hope you will continue to fight for what you are owed. It has definantly has taken my life and turned it upside down. Find a good doctor that is willing to fight for you. He is also the key to winning your appeals.

  • This. This times a million. This is my every day. My husband’s every day. My husband who has ankylosing spondylitis, migraines, and gastroparesis can apparently still hold down a job. He can’t even reliably get me to and from the train so that I can hold down my job while fighting psoriatic arthritis. The system sucks. But I’m kind of glad we’re all stuck in it together. Just imagine how much worse it would be if we didn’t have the Spoonie community who all suffer the indignities of invisible illness!

  • ARGGGHHHHH!!!! I am so irritated by the system! This does suck. I will do whatever I can to help youmake it happen. Having had worked in medicine for 20 years was a big bonus for me as far as knowing what to say to the 1st person that interviewed me for SSDI. That being said, I was turned down even though he had told me that just one of my illnesses would qualify. The federal government has done little to help in this, as SLE is not compartmentalized enough on their check list for qualifying for SSDI. Yes, they have people with just high school educations (and no medical knowledge) going down a check list of symptoms that would qualify you and thus, there is often failure. My rheumatoligist told me that I would be turned down and that I would have to hire a lawyer and go through litigation to obtain SSDI. I have a friend that is on oxygen…that means she is only getting 30% or less oxygen without the tank she lugs around. She even had to take in her husband’s death certificate to prove he was dead…and still NOTHING. I wish that I was healthy enough to travel around and help everyone that can’t qualify. I would make it my life’s mission!
    What turned things aroud for me was showing up personally to meet with the woman doing my review. I carried all of my stacks of paperwork and within 90 days, I not only had my SSDI, but they backdated it to when I actually quit working. Your situation totally sucks…and that being said, I will do whatever I can to help you. You are such an inspriation to all of us. BIG HUGS…softly, so as to not cause you any pain. There is hope. Don’t give up!!!

  • Michelle

    This is what I’ve been going through for the past couple of years. I finally gave up working last month. I’m lucky, my husband works and his paycheck pays most of our bills. We won’t go under without my paycheck (not that I was making much, since I was only managing 10-18 hours a week). I’m just starting the fight for SSD, myself, and I expect to be denied. I hope I won’t be, but I know better.

  • Pearl MacDougall

    Sounds like my story, so sorry you are suffering like that. I too worked a full time job and would cry all the way home with the pain.I couldn’t cook a meal or carry on a conversation I was hurting that much but I was turned down for disability.
    Things changed for me when my Lupus caused vasculitis with a blood clot in my foot. My family doctor fought hard for me & I guess I was finally “sick enough”. I was granted disability 3 years ago & have been put through the ringer with the insurance company. Every few months I have to be retested by one of their doctors and jump thru hoops at a work able facility. If I didn’t need the money I would tell them to stuff it.
    I hope things turn around for you soon.

  • TXSpoonie

    I am in the same boat. I lost my job when I asked for FMLA time off on an intermittent basis. I spent a few months on unemployment and now am trying to earn enough to make bare ends meet on a part time self employment basis. I can’t work full time, but my DrHiney won’t support disability for anyone. Must be nice to be that confident. Anyway I also make too much in my part time struggles to qualify for other programs. So I’m uninsured, constantly at risk of losing my family’s house, and trapped being too sick to be normal and not sick enough to be helped. Thanks for representing us.

  • Dawn Kendall

    This is my story. Reading it in print made me cry. Praying for you (and me).

  • BTW, I too cried and my doctor asked if I was depressed. I wasn’t, just frustrated as all hell but it is actually easier to get disability for depression than CFS at least in MA.

  • Yvonne Murphy

    Wow…Awesome!! You hit the nail on the head. I am, however, that you too are “living” this way. Stay strong!!!!

  • I swallowed my pride and stopped acting. I show up at doctor’s appointments with greasy hair and mismatched clothes. I’m not going to hide anymore. I’m sick and I’m not putting on a brave face for the benefit of others.

    I too get copies of everything from every doctor and test I have. I have a large file going and I’ve only been ill a year. I even have copies of the actual scans I’ve had done, not just the reports.

    It really frosts my onions that I’ve paid into LTD for 12 years and my work told me that I would be taken care of but when the rubber hit the road I was denied benefits for lack of medical evidence. I have CFS it doesn’t have any medical evidence. I’m in the middle of appealing it but this was a surprise. I had to use my savings to hire a lawyer. Now doctors won’t go on record with diagnosis even though I meet the CDC criteria for CFS and FM. No one wants to do an affadavit for my lawyer. It sucks. I would have done better to have stuffed the insurance payments under my mattress. They would have done more good there.

  • Wow- I love reading your articles, not because I like seeing that someone (many others) suffer as well but you always seem to hit the exact thing everyone, including myself, thinks. 9 times out of 10 I share your posts on my Facebook page. I think you also wrote the one that spoke about saying we’re fine when we’re really not- I shared that and was completely honest (as I mostly am) that it described my day to day situation perfectly. I wrote- I am lucky enough to have confidants that truly want to know how I am doing but I’m afraid of actually sharing the whole truth on some days, whether it be to family or friends- you’ll never know. 🙂 I am by no means happy that I have RA, FM and Narcolepsy but I am beyond thrilled that I live in the technology age where I have been able to find so many people to support me and me them. Thank you for being one of those amazing people that does not hide and is outspoken. You give strength to the rest of us that may need that extra nudge.

  • Cindy from Baltimore

    I totally understand! I have RSD, or Relfex Sympathetic Distropy, or Regional Pain Syndrome, a hidden diesase. Where the signal that tells your brain your in pain doesn’t shut off. It effects your nervous system.I’m in pain 90% of the time. I have days where it’s not that bad. I look normal on the outside, but on the inside, my pain rules my life.
    I try my best to be normal but it’s not easy. When you have to take pain pills and function, work and take care of my family.
    My family has suffered and I was forced to retire from the police department. I have applied for disabilty but of course was denied.
    I have an office job now, where It’s just me. I work alone, thank GOD! and on the days when I can’t get out of bed. I can work from home, but I need disabilty. I don’t know how long I can do this. It is a struggle to do even this job sometimes. I’m bless more than most, so I hate to complain, but your story just hits me in the heart! I know how you feel my sister. When you cry in the middle of the night while everyone else is asleep. May God bless you!

  • Lexi

    Wow. You courageously described a decade of my life. My 20’s, and now my early 30’s. I was made to feel like I had some psychosomatic disease by every doctor I saw. It was “all in my head,” because I didn’t look sick. After six years, my rheumatologist diagnosed me with CFIDS or Chronic Fatigue Immune Dysfunction Syndrome, as well as Fibromyalgia.

    I thank you for putting your story out there. I hope to be in touch with you. You sound like a strong and amazing woman. God bless.

  • Ivy

    Wow! Great Article!

  • So ture.
    It’s hard to explain to people, yes yo can work, but life is not just working from monday to friday, and sleeping the week end to be abble to work the next week !
    It’s not being selfish to ask to be abble to do others things than just work !
    Yes your not ill enough to stop working, but your ill enought to stop having a life !

  • vivian

    I was disabled 25 years ago from organo-phosphate insecticides, xylene solvent, ADBAC. I was put on disability in part because the brain damage made me unable to smile or laugh. They called it depression, because environmental illness and chemical sensitivities were not acknowledged as a medical condition. Now it is called fibromyalia and chronic fatigue. Please go to Panna.org about short and long term effects of organo-phosphates and other pesticides.

    For those of you suffering, read every label, rejoice when you see spiders and bugs, see an allergist, chiropractor and avoid unnecessary medications. The medications can make it worse. Avoid makeups, perfumes and unnecessary chemicals. Chemicals are making us sick.

    I got well, went to school, worked and was exposed to more pesticides and chemicals and my health is now gone.

    Live clean, fight for our and our children’s health, no one else will until they understand.

  • Kat

    I was very lucky when I was able to get on SSD. thou it did take me 4 years to get it. I tried to work here & there. Had been to sooooo many Dr. all w/ the same thing take me out of work for so long & then back to work. This made it hard to keep the job for the fact alone that I was out more then I was in. This in the long run made more of a case for me.
    I hate not going to work @ times in fact I miss it. But, I do love the fact that I can now enjoy the simple life of spending time w/ my family more then I have since this all started. keep the faith it will work out. Just need to hold on. Good luck to all.

  • Hey Kristi,

    Thank you for all of the information. The condensed version of my answer to your question is there is NO (and I can’t capitalize that enough) way that my family could survive without SOME sort of income. I cannot just quit my job to “prove” my inability to work. In that time it took to “maybe” get approved, we would lose everything. As of right now, I cannot and will not risk that for them.

    I thank you for the wealth of information and will most definitely be in contact with you as I have a TON of questions that I’m pretty sure you can answer for me! 🙂

  • Sher Lambert

    This hit a home run with me! It’s ridiculous the “act” we have to live just to appear “normal” to others. We’re not normal (whatever normal is), we hurt, we’re tired, we’re frustrated, and yes even depressed because we can’t do what we should do, much less what we want to do.

  • Jeffrey

    Sometimes life leads us down the path that we’re suppose to be on. Maybe there is someone out there you couldn’t help right now if you weren’t working. Maybe you have changed someones life or given them hope (as I have found solace in this article) because you’ve been denied. I’m floating in the same pain-riddled rejected-disability boat. I’ll paddle. You steer.

  • Kristi

    The cold hard truth about disability is you can’t be working when you apply for disability. By going to work you are proving to Social Security that you CAN work. Unfortunately, when you go on disability you can not have any assets. The government defines disability as being too sick to work and having no assets or means to support yourself. I’ve been there…done that. Fortunately, I was one of ‘lucky’ ones that was approved the first time I applied…however, having said that I still had to jump through the system hoops. Since my physicians didn’t have the time or staff to copy my records and forward them to SS they had little to go on. But SS sent me to their physicians; which they paid for. I just had to show up. The good thing was my MRI results DID make it to SS and they gave those to their physicians prior to my visits.

    Also I learned that even if SS is a federal benefit each state manages it differently. You know, the right hand doesn’t know what the left hand is doing…I lived in NC when I applied and I went to the SS doctors in NC. I knew I couldn’t stay in the south due to the heat and was planning on moving after my SS was approved. After six months of waiting and being sent to more and more SS doctors ..and not to mention being locked up in my house because if I dare go outside I knew my body would go into a full spasm. I left NC in July 2010 and moved to Illinois to live with my boyfriend. Before leaving I told the SS caseworker in NC I was moving and he electronically forwarded my case to my SS office in Illinois. I was in Illinois for about 2 weeks and decided I’d call the SS and find out the status of my claim and to check if I needed to see any of their doctors here. I was told the case is still pending and it would be worked “soon”. I didn’t know how long I was going to have to wait but I was without a job, medical insurance and an income. About a week later I called again to check on the status. It was at that time I was told that my claim had been approved and my monthly benefit amount. My caseworker told me I would be receiving all the information in the mail. She then calculated the back wages and told me she would be issuing a check with 48 hours. I was almost on the floor because it seemed too easy since my move. How could the same federal agency send me through hell in one state and not the other? But that is how the government works.

    Another issue is the doctors. You may love your doctors, but if they do not agree with your disability they will do little to nothing to assist you with your claim. Even if they do agree with your disability, like mine, most of them won’t provide the medical records that are needed. As a rule of thumb I instruct the disabled to ALWAYS get a copy of every test, office note, ER record they can…I have a ‘medical file’ that I maintain all my records. That way I am not ‘depending’ on anyone else to provide the records and the less of a delay you have the better.

    Being disabled is a full time job…and I’m not joking. The amount of paperwork I have to complete for all the different programs is endless. I strongly encourage anyone with a disability to get a Disability Advocate. An advocate can be found online and are usually listed under the county/city or state that you reside in. My advocate found every program I qualified for..including free legal. And yes, the disabled are discriminated against at every opportunity…beginning with social services. For medicaid you do NOT need to go to the social services office. You can print the application online, complete it and mail it in. Once they receive the application they will send you a request for the information they need. Copy that information and mail it in. Food stamps is the same way and usually issued at the same time Medicaid is.

    Medicare becomes available two years after your disability date; which is determined by Social Security. Your card comes automatically in the mail about two months prior to the effective date. My advocate also told me of a program that pays my Medicare premium so I can afford my deductible and co pays. People often think Medicaid is FREE…but not always. Ii have a ‘spend down’ a.k.a. deductible every month of $270.00. I have to have $270.00 in receipts turned in each month or pay the state my spend down. With Medicaid physicians are limited, but with Medicare you have more services. …well, at least until Obamacare begins…and then those services will be cut too. (Currently there is a class action law suit against the federal government by MS Society, and several others, for different therapies to be covered. Medicare only wants to pay if “improvement is made to the patient” and many diseases there will never be an improvement until a cure is found)

    Anyone that applies for disability is forced to live on little to nothing until their claim is approved. After the claim is approved, funds are limited. Many times, depending on the disease and disability, your disability case comes up for review every 3 years. So the process begins all over again. It’s not easy and like I said previously, being disabled IS a full time job! Each person is different so you have to weigh your options. It doesn’t sound like your attorney did their job…why didn’t they tell you to quit your job or get fired for attendance due to your illness? Remember, you have to demonstrate your disability….by working you’re demonstrating you are able to work.

    I can give you any information you need. Good luck to you!

  • Kristen

    Wow – definitely something that many of us are going through. I had to stop working because I just couldn’t do it anymore, still fighting with the disability process though, a year and a half later. Not to mention that I have plenty of proof and 6 doctors now who have signed off that I am totally disabled for SSDI.

    And I have 17 different doctors now for all of the fun things this disability brings on, and I have actually cried in front of some of them, in pain. And the result that brings is that they believe I am depressed and need counseling, so damned if you do and damned if you don’t. It certainly wasn’t because I drove 90 miles to see them as a supposedly caring specialist in their field and was in so much pain I could barely walk into the office.

  • Carol B

    I’m sorry, Steph! It sucks beyond measure! (((Hugs)))

  • You’ve hit the nail on the head. I was told by doctors that I’m not disabled because “if you can get to my office, you can get to a job” — never mind that I was FIRED for reliably getting to a job that I couldn’t perform once I got there because I was so exhausted from getting dressed and commuting. I was told by lawyers that I was too disabled for ADA “reasonable accommodations”, yet was told by judges that I was “not disabled enough” for Disability because “you look healthy to me”. On one occasion, I felt like hell and had my head down on the table between answering questions because I was on the verge of passing out, but the judge insisted I looked fine.

  • Cynthia Snyder

    Stephanie, I am so sorry you are going through this crap……..I was SO blessed because I got my disability my first time…..BUT MY Rheumatologist knows how sick I am…..it’s because of him that I got it the first time I tried…..God has really blessed me with this wonderful man…he is a true healer and really cares……I live in Asheville and I sure wish you were closer……his office is 25miles from my house in Clyde but I’d drive further if need be…..It really stinks when the doctor that has given you the diagnosis won’t back you up….especially with the diagnosis’ you have….I wish there was something I could do to help you…..it makes me so angry when I read or hear stories like yours..it is SO wrong…I’m assuming there are no other docs you can see???? I will keep you in a bright ball of healing light and in my prayers…..I will go on fb and look you up……I will send a friend request..if you want accept..if not that’s fine also cause I know you don’t have the energy to do much and want to spend time resting and with your family…..or you can send me a request…Cynthia Copeland Snyder…I’ll leave it up to you…….GENTLE HUGS

  • Debbie

    THIS COULD HAVE BEEN WRITTEN BY ME. THANK YOU STEPHANIE.

    I GET UP AT 4:30 AM TO GET IN THE SHOWER, I GET ASKED WHY, BECAUSE I CAN ONLY USE ONE HAND AT A TIME TO WASH MY HAIR, IT HURTS TOO MUCH TO USE BOTH. I HAVE TO WALK TO A BUS STOP AT 6:30 AM TO GET TO WORK. I DON’T GO TO YOUR EXTREME (THANK GOD I DON’T NEED BUSINESS SUITS, I DON’T CARE ABOUT THE MAKE UP, THEY TAKE ME AS I AM. I TAKE 18 PRESCRIPTION MEDS, 6 SUPPLEMENTS, 1 OTC AND A GEL. I GET OFF AT 5:00 AND GO HOME AND PUT MY PAJAMAS ON AND GET IN THE RECLINER, I DON’T HAVE YOUNG CHILDREN BUT I HAVE A GRANDCHILD AND DAUGHTER WHO LIVE WITH ME. I HAVE A BOSS WHO NEVER POPS A TYLENOL WHO LOOKS AT ME CRAZY WHEN I CAN’T PUT IN OVERTIME. SORRY, I NEED THE WEEKEND TO GROCERY SHOP WITH MY DAUGHTER ON SATURDAY AND THEN TO REST FOR THE NEXT WEEK.

    I ALSO WORK FOR THE CRAPOLA INSURANCE THAT TAKES OVER 1/3RD OF MY CHECK AND THEN MY CO-PAYS TAKE ANOTHER 1/3RD OF MY TAKE HOME PAY AND MY HUBBY IS WAITING FOR A SSDI DECISION AND HASN’T WORKED IN 4 YRS, I AM IN PAIN 24/7.

    I HATE LIVING LIKE THIS BUT WITH THE STRENTH GOD GIVES ME I WILL GO ON. GOD BLESS ALL.

  • Vera

    When my brother-in-law went for his disability eval. he was told “confidentially” by a counselor, not to shave for a couple days, wear something wrinkled or holey and don’t wash or comb his hair. It worked! He walked away with full disability. He DID need it but my sister-in-law always made sure he was well dressed and well-shaven. Sometimes it pays to look as bad as you feel. Good luck and God bless.

  • Lyn

    Stephanie; my heart goes out to you. I have experienced each one of the topics you identified such as; being turned down for disability, self-tanners, insurance issues, etc.. and of course, “YOU DON’T LOOK SICK”.

  • Home run Hit

    This hit right at home. I have been fighting for disability for so long that it’s not funny. The difference, they told me that they know that I can’t work any past work and that I can only do sedentary work. I can’t work around noises, fumes, vibrations, and so on. With that said, they are saying I’m disabled and that I can’t work, but they don’t want to pay me the money that I’ve paid in all these years because I’m under the age of 35. The system is screwed and yeah, they do decide it mostly based on age, I think. I use a walker and cane and I have more than 20 disorders, 5 being autoimmune. Hmmmmmm, my body hates me and I’m being attacked every day. Time to give it up SSD/SSI, these people hurt, whether you see it or not.

  • Kathy

    Thanks for writing this, it really does hit close to home..I feel your pain and hopefully one day (soon) we will get the benefits we DESERVE!! Keep your head up!

  • Suzi

    This hit very close to home for me too. Life needs to be about more than just being able to work, you need to be able to actually LIVE.

  • Wow- are you ME? This describes me to a T.
    I work, I travel, I’m even 62.
    I should be home in bed most days- but the great pretender just keeps on going.

  • Sue

    another WOW… made me cry for you and for me… hit so close to home…. thank you for sharing and caring….

  • Broken

    Boy how I know this.

    Sick enough to feel like crap, but not sick enough to get any help.

    Yeah, I can work, but that’s all I do because at the end of the day, I come home and go to bed. How am I doing my kidney transplant any service? How am I living and appreciating the life my donor family gave me if I’m too worn out to do anything? I’m not living, I’m merely trying to survive day to day.

  • Thank you Stephanie for describing what I deal with everyday also. My heart goes out to all the people who have to do this everyday because “we don’t look sick” . I pray this will all change soon. God Bless us all.

  • Cori

    WOW… this hit WAY too close to home. another home run article.

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