I was denied benefits the first time I applied and it was devastating. Luckily, my neurologist, GP, cardiologist and gynaecologist all fought for me. I’m so blessed to have such a great team of medical professionals on my side. I don’t know what I would do without the government support I receive each month. And you’re right… Apparently the appearance of health, not dressing like a sick person and putting on a brave face are all causes for dismissal. It’s terrible.

as i read this, i am at my desk, at my job. I have been out sick already once this week. I was actually able to work a full week last week. Its a challenge to function anymore. I feel like i have been left behind by humanity. My work is supportive, but like everything else, there is a limit to how long they can maintain at this rate. I keep hoping against hope that the next treatment or something will work. I take so much medication and nothing really comes close to feeling ok. I read the spoons theory thing and just cried. Its so hard to get up and get moving and by the time i get here, i am exhausted, and how do you explain that to people who don’t have the same issue. When i tell you how hard it is, you get it totally, but no one else does. I have psoriasis, celiac and RA. i was on fentanyl patch for awhile and it worked, but i literally was falling asleep driving and was afraid for my life. if i take ambien to sleep , i sleep but then i am prone to doing crazy stuff in dead sleep like driving etc. i have yet to embark on disability, but i think about it alot. mostly i think about how nice it would be to go to sleep and not wake up. not to actually do anything to myself, but just to have it happen. because some days, the struggle to exist seems too much to bear. But then, one of these days, will be a good day and i can shake this off right?

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??

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.

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.

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.

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.

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!

@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

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!

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.

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?”

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.

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

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.

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.

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

Get another doctor and fire Dr. HINEY!

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? 

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.

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.

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.

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.

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!

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