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.

©2024butyoudontlooksick.com
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  • Marianne

    Ken, I work in a VA hosital and see men with your condition ALL the time. AS and Lupus are light years apart. There is no way to compare the two. You don’t seem to have any conceptual understanding of what dealing with an autoimmune disorder is like on a daily basis. You are way off base on this one sir. You are so fortunate to have the kind of strength to deal with your condition. Autoimmunity sucks the fight right out of its victim, i.e. leaving them with “no spoons”. Educate yourself please!

  • I’m in the same boat…I have a lawyer working on my case and a year and a half later with dozens of letters and forms signed by doctors saying “SHE CAN’T WORK!” they still want “more information”….WHAT OTHER INFO DO YOU NEED????

    It’s frustrating, and I feel your pain.

    The ONE thing I hate more than anything in the world is having to prove myself and having to prove I’m SICK is enough to make me punch something 🙁

    Thank you for your article…it really couldn’t have come at a better time! Just don’t give up, that’s what my lawyer always tells me…keep trying and trying.

    *hugs*

  • Dear Ken

    To quote a Banner from the big protest of half a million here in
    London:

    ‎”cameron if you want my benefits, you can have my disability” #26march #march26

    And just so that you know – on the basis of what you have posted here you wouldn’t get jack from the UK gov – ever. Matter of fact there are terminally ill people, double amputees etc being found *fit for work* by ATOS. Suggest you do some research to know how fortunate you are to be able to run marathons – clearly not disabled at all then.

    Good thing you don’t need help eh?

  • Chris

    Ken is Ignorant! I’m in complete agreement with Steph’s defence team. 🙂 I too would rip him a new one, if the Brain fog had not set in this morning. (I hope this makes sense)
    I have come in contact with so many of his kind over the years. I’ve “almost” become callus to it. I think Ken needs to do some research & find out What Lupus Is, before spewing a bunch of (someone said it best) “Self Righteous Crap!” at people who never asked for this, (Example: living a unhealthy life style) & do Not want to be in this situation in the first place.
    Keep your head held high Steph! He’s only one. We are many! 🙂

  • Rosie

    Wow I often wonder to myself how the disability people could be so heartless and not care about people quality of life. I’m so glad KEN gave me a look into the mind of a complete douchey idiot. Thank you for that because you running your mouth about a story like this completely confirms the need for a “but you don’t look sick” support system. I am so thankful for you to have been able to fight through you disease but some people it’s impossible. I have been bed ridden for 6 months and I have to “fight” every day to hold my head up. It’s amazing to me that someone who has battled a condition could be so judgemental of someone else. Do you have lupus? If the answer is no, then no matter what disease you are fighting, you have no right and not enough understanding to tell anyone with lupus how to live. I think your back problems are all in your head and you just need to fight harder. There how did that make u feel? That’s essentially what you just did to Steph. Congratulations on your superb idiocy!

  • Note: I am writing this in a personal capacity, not as a representative of the Disability/Mental Health/Carers campaign to which I belong.

    Dear Ken, whilst I can appreciate the “think positive” mantra – the bottom line is that sooner or later reality gives you a swift kick or few and the “will conquers all” attitude falls away as the temporary illusion that it is for many of us. I’m taking you at face value that you are managing and everything is just fine for you. But that’s you. Just as no two people are exactly the same neither are spoonie experiences with our particular health issues.

    Steph isn’t here throwing a pity party, she is shedding a much-needed light on the assumptions that many not-yet disabled people have about us. I used to hold down a well-paying and very demanding job in investment banking. Since the onset of my physical and mental difficulties I have had to accept that not only can I not manage the fast-paced city-girl life, but I have to let go of my fierce pride and dignity and damn near beg for help from the State… and even from the people I thought were friends. I can’t stick to a regular schedule because it is physically impossible. My life was exactly life Steph’s is now… Force myself to get up and go to work… living off of sweets, sugar and energy drinks only to collapse and not leave my flat from Friday night until Monday morning…. if I didn’t call out because I literally couldn’t move further than the bathroom and even that was a chore. In the end, when my diagnoses came through I was forced out. And no one will even bother to interview me now two years after the fact.

    And a core part of why I dont get help even for basic things is no thanks to the mentality you exhibit. I am not a superwoman. I would dearly love to be able to do every single thing people insist upon, but not only is it impossible physically – financially I cant afford it. Here in the UK disabled people are being demonised by public, government and media alike. For many of us Disability payments are what allows us to manage our daily lives and it is certainly not one of luxury. Receiving this help isn’t a lifestyle choice at all. Steph isnt making pity excuses – she does the best that can and is a great example to us all. She is trying to hold down the job for the good of her family – but at a significant personal cost. It’s wrong to attack her as a parent or role model because she isn’t able to live up to your standards…. Where is the solidarity? It’s bad enough when able-bodied people make these judgements about how severe disabilities should be in order for us to get support, but it’s even worse coming from fellow spoonies who really should know better. One day – it just might be you that can’t be the superman, you that needs the help – and someoneindeed a few people *will* be there like you making these arguments. It is very demoralising to have to put up with and is quite insulting too.

    You may mean well with your pep talk, but it does far more harm than good. I offer this as food for thought.

    http://thebrokenofbritain.blogspot.com/2010/12/tbofb-feature-by-ukuncut.html

  • Angie_stl

    Everyone but Ken, I would like to say I’m in pretty much the same boat. I’ve come to know Steph over the last few months, starting because of our shared love of Criminal Minds and our struggles with being chronically ill. We suffer from different diseases but it seems we share a lot of experiences.

    Ken, I will try to remain mature in replying to your comments, but it will be very difficult because really, you are hitting below the belt and it seriously angers me. How can you think that you can tell what someone else’s quality of life is? As I said, I’ve gotten to know Steph over the last few months and I can promise you, her work life suffers just as much as her home life. She has had me so worried a few times that I wish I could jump on a plane to go there to assist her with her work, her family and even her own personal care. Unfortunately, it is physically and financially impossible for me to fo that. So I contacted a family member that lives close to her to try to get her even the smallest amount of support. Because that’s what any decent, COMPASSIONATE persons would do. I’m very happy for you that you are able to do all the things you listed. For me, a marathon is going shopping for myself. It’s walking to the mailbox to see if some small check has arrived that might make it able fore to keep my horribly expensive insurance until I’m approved for state or federal aid. It’s spending time with my elderly parents because no matter how many spoons it costs me, I’m not sure if it will be the last time I see them, that their disease or mine might make it impossible to do again. I can’t understand how someone, that says they have a chronic illness, could possibly sit in judgement of another. Each disease affects each person differently. I know others with the same conditions that I have work 16 hour days, and I did that for a long time too. But now, I’m doing good to cook ramen noodles. And you can be sure that those dishes aren’t done for a while after because I don’t have the energy to do them for hours if not days after. I can’t understand how you can tell her to quit feeling sorry for herself. Do you know her? I’m going to guess not, considering that I, and many others that care about her, have to beg her to go to the doctor because she can’t breathe. Or she can’t walk 10 steps without almost falling over in exhaustion. Until VERY recently, she would run 5 or 10 miles a few times a week. She only stopped because she couldn’t breathe. I don’t know how anyone, let alone a chronically ill person, could act like they are superior to any other in a similar situation. I’m not sure if you’ve heard, but everyone was created equally. What happens after that changes us. I will not say that I know anything about your conditions, I do not. Maybe you are some miracle. Maybe someone else with the same conditions might be bed ridden. Maybe they would need help with everything. But just because they do, does NOT make you superior. Again, each condition, each situation, each person is DIFFERENT. I’m happy for you that you can accomplish so much. Good for you. But again, don’t judge others by your standards, by you accomplishments. This website, this group of people, is here for support. What you are saying would be the exact opposite of what I have come to think of this community as. I’d like to think my spoonie friends as my extended family. And as always, there’s that one uncle or cousin that no one wants to sit next to at Thanksgiving. I used to think it was my evil Uncle Joe, that I promise you I hate more than anyone else on this earth and I do not say that lightly. I’ve now decided that I’d sit next to him in a heartbeat over you. If you’d like to continue this conversation, argument, discussion, whatever you want to call it, you can find me on twitter with the same name as on here.

    I would like to apologize for any typos, my fog is only surpassed by the haze of red.

  • Courtland

    Ken,
    I don’t normally respond to my wife’s articles other than saying “great article.” However, after reading your comments I felt I needed to comment more in depth. First of all, the fact that 99% of the comments on this particular article are in support of the author, her struggles and frustrations speaks volumes to the fact that you Ken are so steeped in your pompous “I’m stronger than everyone else” egocentric attitude. Until you walk just a day in the life of my wife you can’t even imagine the strength it takes to do just a tenth of what she does. I’m sure you have your own limitations physically and mentally due to your own diagnosis’s. To even suggest that my wife has given up fighting because she is frustrated by getting denied for SSI is simply ignorant. She fights daily to be an incredible mother, wife and employee. She works because we NEED for her to. Not only to help pay our bills and to carry our medical insurance but to save for our 3 children’s future college educations so that they can have a brighter future. You commented that she needs to send a positive message to our children. When our children look at her and the pain she is in daily and ask me “Why does Mommy have to work so hard everyday?” speaks to the message she is sending. That message is: Your Mommy is a strong woman who will do whatever she needs to do to support her family regardless of how it impacts her quality of life and health.” Finally, if you are still physically able to participate in a group marathon does speak to the fact that NO you are not, at this point, a candidate for SSI. My wife on the other hand is not physically able to carry our son of 3 up just ten steps to tuck him in at night. During the last Lupus WALK we helped chair I had to carry her back to our car because she was not physically able to even crawl. I should mention she did not even walk in the Lupus Walk she merely volunteered. Enjoy your marathon. I hear Nike has really good running shoes which may help alleviate any further damage done to your vertebrae.

  • Karen

    Dear Ken,

    You clearly lack the ability to walk a mile in another’s shoes before you judge, or in this case comment. Kudos to you and your ability to work. I would be happy to send you the cookie you appear to believe you deserve. Stephanie has on ongoing chronic illness. There are days when you feel great and then there are days you feel like someone put you in a burlap sack and rather than bring you to Julius Ceasar for some hot ancient Greek sex*, instead takes the sack, ties it to the end of a rope attached to the top of a pole and uses you as a teather ball.

    Now as far as you paying for someone to stay home, Stepanie has been paying into her disability benefits as well as her Social Security. She has paid her dues and needs to use them. You’re whole anticlimatic “Take Control” finish to your comment is insulting. Stephaine is taking control by taking care of her health. If she is not healthy she cannot take care of her family. I have been lucky enough to be on disability and I have the same thing she does. Now that I am healthier because of it and have medicare instead of my former craptastic insurance, I am getting the care I need and feeling better. It allows me to contribute to my community as a volunteer. The nice thing about being a volunteer is that when I am sick, it’s not a problem. I don’t loose pay and my supervisor doesn’t have to worry about replacing me because what I do povides support to paid employees. Then as soon as I feel better, I come back and help where I am needed. So this useless dreg of society has found a way to still contribute to her community while disabled. I cannot be counted on to be at work on time. I cannot be counted on to make a deadline because flare-ups and lungs problems. But I don’t have to sit home and feel useless while my son is in school. I am only able to volunteer one day every other week, but for that day, I get to feel like I am a part of something outside the illness. I feel, dare I say “normal”. So Ken, Kudos again to you, but from my perspective is please take your judgment of people like Steph and I, and re evaluate it. If you come up with the same conclusion, write it down wrap the paper around your vibrator and go screw yourself with it.

    Have a great day and I wish you health and happiness,
    Karen
    @karenOvasquez
    * (Cleopatra ref in honor of Liz Taylor)

  • @Ken

    Do you have a wife and 3 kids? Does your wife work? Does she cook? Are ALL 3 kids still at home & under the age of 16?

    Lupus kills. Everyday. It killed a girl named Nicole at aged 32 because she had to take too much time off work for treatments/medication side affects. She lost her job subsequently losing her insurance. She died due to lack of medical care and the same medication that helps keep Stephanie alive everyday. I also know that Stephanie has an understanding employer but she is always > < this close to being fired for having to take too much time off for doctors. Lupus IS a full time job! You can not see just one dr for Lupus. Medications make you sick. Good for you for still being able to work. I know someone with Ankylosing Spondylitis who cannot work. Last time I checked Ankylosing Spondylitis is NOT the same as Lupus.

    Sidenote: I do NOT have Lupus but other issues that keep me from working full time. I still work part time but my house is a constant mess!

    Suzanne
    @MeriLizzie

  • Infuriated

    Ken, you’ve missed the point. It is not expected to be unable to function for ones self before they can get disability … one is allowed to be well enough to do chores of daily living ..and if they cannot work AND do those chores of daily living then they are considered too sick to work.

    by the time I got it, I was unable to do chores of daily living, much less daily hygeine care and had to be fed and dressed by my spouse.

    there is no reason for someone to have to be THAT sick ..

    and no no one thinks of it as a hand out for a ‘great quality of life’ .. no one is niave enough nor stupid enough to think that if they get onto disability they will be living the life of riley ..
    they KNOW they are taking a significant cut in pay, will in all likelihood be shoved below poverty level or awfully close to it. Vacations, sports for their children night out at the movies will become a thing of the past because there won’t be enough money.

    But they do know that their rent will get paid, they will have some degree of control of medication costs and will, on a good day have the stamina to make it to the doctor’s appointments.

    Life on disability SUCKS! it is degrading
    it is a life of poverty
    it is embarrassing
    and it is painful … mentally, socially and physicallly,.

    when one goes onto disability they know they will become a social pariah with idiots like you looking at them as if they have their hand out for gold …

    We all know better. We know that no one will truly get it …and we know that it’s a heart breaking situation and we’ve all heard the risks of children born into poverty …and that is where we are taking them …so that we can take good enough care of ourselves and our families so that we can actually LIVE LONG enough to possibly see improvement or a cure.

    I’ve had 2 friends with your condition, by the way … and I’ve spoken with both of them in the last 2 minutes and they both said “he’s either out right lying … or he’s had surgery or something to cause him to be in remission because there would be no marathon with this condition.”

    Do I for a second believe you ..nope … I think you’re one of those higher and mightier who don’t know what it’s like to be in true pain but you’ve had a back ache that obviously doesn’t interfere with your life (because if it interfered you’d not be training for a marathon!!!) and you’ve decided that you know everything about motivations and how people who are needing disability have their hands out for a fanatasy life …

    there is no fantasy life …for most of us .. our true fantasy is that these illnesses and condtions would be gone … magically wake up tomorrow and they’d be gone and we could gladly go to the working world and hold our head high knowing that THIS is the life that most americans want … one of respect, accomplisment and participation in society … THAT is our ‘dream world’ ‘fantasy land’

    our fantasy is NOT to be on disability sir ..

  • continued:

    SSD and both need and deserve it. I am over 55 and have worked since I was 14. I am 100% disabled. That being said, it is such an individual thing as to being disabled. I do not think the article was based on “quality of life” as to staying home. It is the frustration of working to death. That is what happened to me. I too toughed it out but it cost me dearly as it just broke me down physically and mentally. So many people are doing what I did. Why? Because they have to. Again, I am happy for you but if you cannot say something helpful, don’t comment. We have all heard this before.

  • Nicole

    Ken – if you knew Steph you would know that she is HARDLY someone who feels sorry for herself. She fights for people struggling with the disease that has taken her hostage because she has the unique ability to be their voice. She doesn’t write what she writes in order to make people feel sorry for her, she writes to let people in her shoes know she understands, and she writes to let those who aren’t in her shoes know what it’s like to live her life. She is a HUGE inspiration to me and to many others who realize that nothing is impossible if someone like her can continue to carry on with her head held high. She is not a good example, she is a TERRIFIC example not only to her friends but also to her family, ESPECIALLY her children who know how hard she fights. All she is asking for is a little understanding for the fact that she is using every last ounce of strength she has to hold that full-time job, for the good of HER FAMILY – and that as a result she is left with nothing for anything or anyone else in her life. And it’s not as if she’s alone there – as the comments here can attest, this is a reality for the multitudes of people who are diagnosed with lupus or other “invisible diseases.”

  • Great article and especially appeals to the younger sufferers that have to work so hard with jobs, kids, spouses, etc.

    Now to Ken, what most people need is not to be given a pep talk such as yours. I am glad that you are dealing with your disease process as you have, however, disability is not that cut and dried. I receive

  • Ivy

    In Repsonse to KEN – I happen to be one of those people on disability for Lupus and I also happen to know Steph personally…..You’re attack on her character as being “weak” and that she needs to “take control” is totally and completely uncalled for! You have no idea what she goes through daily, and the article does not even touch on it! Good for you for fighting your self righteous fight but that doesn’t give you the right to compare yourself to others OR throw your self righteousness in the faces of others. No body knows what another goes through until they walk a mile in their shoes. Get Off Your High Horse!

  • Shauna

    I had to lose my home and be homeless, crashing at a friend’s house and it still took another year before I was ok’d for disability. It’s a stupid system with people who are paid to save this system money rather than make sure those who need it are getting it.

    My heart goes out to you. You have my thoughts and prayers. I am in awe of your courage to share your experience. Blessings to you and your family.

  • Ken

    Stephanie,
    While it is unfortunate that you have illnesses that compromise your quality of life at home and with your family, it is not societies responsibility to pay you to stay home and have a great quality of life! My doctor has begged me for 5 years to go on disability because of my spine damage from Ankylosing Spondylitis and most recently from blindness that is starting due to uveitis and scleritis. For 5 years I have fought, and had a very similar experience to you of debilitating symptoms after a grueling 11 hour day at work – but this has made me stronger and helped me become who I am. I am still digging out from medical bills and medication co-pays over $700 a month, and I’ll get there eventually but the hope of instant fixes is long gone. My disease is just as active as it has ever been, and next month I will run on a team in a marathon – because I never stopped fighting! You seem to miss the point of “disability”, it is for those who CAN’T work because of severe mental or physical limitation – there is no such thing as “poor quality of life payment”… it’s called a fantasy handout! Quit feeling sorry for yourself and take an active part in changing your life! Set small goals. Empower yourself, and most of all, send the same message to your kids! Your statement about pushing yourself until THE system or YOUR system gives is weak and shows the fact that you have a negative outlook despite thinking you are fighting through it. Why not say that you will push yourself until YOUR system WINS! Take control!

  • Kris

    It pains me to read the comments about the approval of the Healthcare Reform Law. I suggest every person READ the bill before jumping on the propaganda bandwagon.

    I read the bill…yes, it was painful, but I wanted to get informed..not listen to the media’s biased opinion. This bill is the big power grab in American history and it takes away every bit of ‘freedom’ we have for our personal health care. I do NOT want the government to have access to my medical information….I think it is a disgrace that elected officials have forced socialized medicine on people when we continue to pay for their ‘Cadillac plans’.

    This power grab will cost almost a TRILLION DOLLARS in 10 yrs…and we have to pay for it now, but reap no benefits of it until 2014..I may be dead in 2014!!

    The CBO (Congressional Budget Office) states that people on Medicare, like myself, will see a DECREASE in benefits -even though we must pay a monthly premium.

    This is NOT a cost effective way to ‘fix’ the health care “problem” in this country. If any of you want socialized medicine may I suggest you take a trip to Europe? I have lived there and experienced the pathetic joke of socialized medicine. Even the UK admits that “it doesn’t work” and they are privatizing their health care system. Isn’t it time we learn from their mistakes instead of repeating them?

    We can fix the problems in the health care system. http://www.healthcarecompact.org

  • Linda

    You might consider having your interview over the phone, I did and I cried thru the entire thing as it was so difficult to admit that I was that sick. Literally I sobbed. Start with the top of your head and make your way down to your toes. Attach a letter written from you on what your life is like and write it with all the feelings you share with us. Talk from your heart and if you have to be humble, do it! Write the letter for your doctor if they’re incapable and ask them to copy and sign it.

    Sometimes strength can be a hindrance when you need something because as you know, But You Don’t Look Sick?

    Good Luck!

  • I laughed out loud at the words you have used so poetically to describe the efforts to ‘not look sick’ that have become to many of us, part of our daily routine. I too feel the burden of insurance that is laughable leaving a mountain of debt behind me. Thanks for sharing!!!

  • I spent five years in litigation with my employer’s insurance company. I had PI’s following me, which I didn’t not know about at first. Once I saw the video it made me sick to my stomach. I settled in mediation 10 years ago. That money has long since run out. I had 10 doctor’s reports and an FAE (functional evaluation) indicating that I was unable to work, yet the government would not grant me disability pension. The woman after me WAS granted DP because she LOOKED older than she was. My appeals fell on deaf ears and I was told to go away. We have been struggling financially for 15 years. I am at my wit’s end financially and all this stress just makes the damn illness worse. Add peri-menopause symptoms and I am a real basketcase.

    I recently wrote our government and told them my story. I did receive a call from a local government official’s office and we talked extensively, though I doubt I will hear from them again. And the Prime Minister’s Office told me they were forwarding my letter to some other department. Don’t expect to hear from them again either.

    I am a Canadian citizen, born and raised, was in the workforce for enough years to say I paid enough taxes into the pension plan to qualify, unlike people the government IS helping who aren’t nearly as deserving.

    Why are people so unwilling to to understand, empathize, believe, care, and help?

  • I am so glad you wrote this article. I feel like it should be copied and sent to EVERYONE around the US-especially to anyone working in disability or the government. This country has light years to go when it comes to invisible illnesses.

    Here is the thing…health care is considered a privilege around our parts. Thus meaning you have to be very wealthy to afford whatever you need or you have to a) suffer b) be lucky enough to work for a company that offers it, even when you are desperately ill and have to work for it at your conditions expense. In addition to this, the way society views illness is sometimes absurd. It is getting to the point where people are rewarded for the heroic ability to withstand say, chemotherapy, for instance, and continue to work a grueling schedule during their treatment. God forbid should, during this time, the government and the medical profession look upon you as a human being that may need some down time during this so that you can possibly come out the other side not entirely damaged.

    I feel that if people with invisible illnesses could get the financial help they need both with their every day expenses, insurance and their medical bills they might actually be able to work part-time or at least a few hours a day and have more quality of life because they can still work, be a productive member of society and feel good about themselves without killing themselves. As we all know the stress alone of being sick and worried about having the means to manage it is hard enough. Why is it that it has to be all or nothing when it comes to help? I have known people who were able to get disability and it allowed them to feel better and even start working again a few hours here and there.

    And it is hard for me to be hopeful that things will change when we have members of our congress and senate hell bent on reversing any progress with health care wasting our time and money when they could be doing good instead. I want to believe that some day our society will be more enlightened-that we will view health care and assistance as a right and recognize quality of life. But again, it feels light years away-especially when we still have healthy lucky people wandering around looking at us and saying “But you dont look sick”.

  • Ann

    Kayleigh had mentioned that every doctor should read this-along with everyone involved in our lives–she is right. I am asking my doc to put this up his board with no names except Stephanie’s.

    I am so sorry to hear about this teeth-gnashing fight, Stephanie…As if you need another thing to add to your ‘list of things to conquer’ for the day. I am dx’d with MS and work as a social worker…I am not ‘sick enough’ for short or long term disability either. And given my profession, and the fact that I help people apply for all sorts of government/medical benefits, (so I have first hand knowledge of all the “key phrases” and “right ways to answer”) I still cannot help myself, because I can work…although it is not who I am, I can certainly understand why so many people give up working in order to get on the system…

    I’d give you my share of spoons for a few days if it would help give you the extra oomph to take (rip) Dr. HeadUpMyOwnHiney’s narcissistic blinders of complacency off his self-righteous little head. Hell, I would even want to help you with that! Thanks for sharing this with us, and thanks to Bev for her extremely helpful info about the application process!

    Ann

  • Renee Paredes

    I haven’t even applied because I can’t stop working and give up the income. Even though I am working very part time and can’t work at my regular job that I did for years. Also I have a clinical diagnosis so I have heard that makes it even harder to get approved. I don’t have insurance anymore because our income is $34 over the maximum to qualify for state medi-cal. So I can’t even afford to go to the Dr and get the tests I need because I am just getting worse and worse everyday. For the last 2 months when I’m home I can’t even get off the sofa and I want to cry every time I need to walk to the bathroom. On the days I work I cry while I am getting ready and am afraid to drive because I know the pain will be mind numbing and I will come home with a headache. I feel like a horrible Mom because I can’t go out and do anything fun with my kids anymore. I actually get anxiety attacks thinking about going out to dinner with my Husband because the last time we had a date night I was in so much pain I couldn’t sit through dinner and almost went to the ER. Instead I just went home and took an extra dose of my medicine and went to bed. I will really be surprised if my husband sticks around and I know the only reason he has is for the children. I told him I wouldn’t blame him if he cheated on me because I never feel like having sex anymore. I am only 45 and it just isn’t fair that my family has to live like this……

  • Carolynn

    Getting a lawyer helped me in a huge way. I am 35, and have been struggling for 3 years now… which isn’t nearly what some of you have struggled through. Mine came through with a favorable decision in January.

    I will tell you that it was immensely helpful to have a lawyer on my side, who believed in me and the case he was helping with.

    More though, I think it helped to have a doctor on my side. Ask your doctors- I have many, and it ended up being the pain specialist who supports very, very few, that supported me 100%. Her support, I am pretty sure, is what helped convince the judge.

    Also, I agree with the smart someone above that mentions that perhaps it is time to stop trying to look ok to the world. You won’t get disability if you work… that is, unfortunately, how the ‘system’ works. And even then, you’ll have to fight tooth and nail for it, because we are young. We don’t fit the mold.

    I’m sorry for all the fighting you’ve had to do, and I am more sorry for the fighting you have yet to endure.

    Stay STRONG.

  • Sara Reiter

    hi
    I’m a single mom of four with a diagnosis of MS. I just finished a long battle for custody of my children with my abusive ex. I work part time. since when can one live on the $1000 or so a month that the SS believes you can live on????? I’m capable of supporting my four children alone without help from the government when I am only able to work part time????
    Yes on the outside I look perfectly normal and healthy. But nobody understands or sees the extreme fatigue and weakness, among other things, I deal with and have to fight in order to do just the regular every day things. I was denied disability but I have to try again. I need the extra help. I will have to start working longer hours if I dont get help and I dont want to take away the time from my children. as it is, I need to rest in bed when I’m supposed to be helping them with their homework, or they go to sleep really late because I dont have the strength to give them a normal bedtime routine.
    well, looking at the bright side, at least I dont have my ex in the same house as me anymore saying that I’m in bed because I’m lazy. and not lifting a finger to help me deal with the household chores which i so obviously was not capable of accomplishing on my own. so now instead of having to survive the abuse and take care of my children and deal with my illness, now I just have the children and my illness… oh and making money. lol.
    good luck to you all,
    I just found this site recently and I’m so happy I did.
    🙂
    Sara

  • Lara

    bravo!!!
    please please please send it to your doctor anonymously-of course!

    may I ask respondent: Bev- former disability worker,

    how is it that we all know sooo many people who get disability and they aren’t sick at all, or living the incredibly frustrating life that stephanie and the rest of us are struggling with?
    and
    Is there any other way route to getting aid?

    thank you.

  • Jeanine

    Your story is very sad but common with people with invisible illness. It is so unfair that the government defines a person disabled only “if he or she is unable to earn more that the substantial gainful activity (SGA) amount for a given year,” (which is $1000/month). So, the reality is you may have to stop working or at least only work part time in order to make less than than that and get approved for social security.
    I have sle myself. I fought for 3 years to get disability. The first 2 times I was told 1. I didn’t look sick (by on of their Docs) and 2. they didn’t care if I couldn’t continue working as a nurse, I could get a desk job . I had been out of work for almost two years. We had stopped paying our mortgage so we could afford the chemo. Just as the foreclosure proceedings started, I hired a disability lawyer.(There’s no charge, they only take your case if they think they can win, then they take a percentage of your first social security check). I got all the paper work, medical records and doctors letters they requested. When it was time to appear before an administrative law judge to hear my case, I went in the way I look when I wake up. No make up, cover up, hair teased, lipstick, nothing. (Well I did shower and put on sweats.) I did win my case and we were able to stop foreclosure with the three years back pay.
    I just want you to know that there is hope. Please don’t give up fighting this crazy system. I hope you can find someone out their to help fight your case. Take care.
    Jeanine

  • Dottie Balin

    Stephanie,
    Great article, I can relate to your story. It took me 4 years to get disability and I like you had all the Dr’s. and paperwork. I also had a lawyer that deals with disability only. I was so depressed that I went to see a counselor and the lawyer said that finally made the deal. Apparently if you see a therapist that helps your case. You may want to try that, besides it is good to let go of all of your frustration. Just document everything. It helped me so I would give it a try. Keep strong…
    Dottie 🙂

  • Michelle jadaa

    YES yes yes,exactly how i feel.You get the diagnoses and then what?
    Refused disability ive had to choose a life over work like you its impossible to have both.The consequences though are loss of self esteem and more pressure on my husband as the sole supporter.
    With the fears of addiction i cant even get pain relief.Im told to take tylenol etc even though ive repeatedly told them they dont touch the fibro.After almost 10 years since my diagnoses its my own research that led to the little help i have.D-ribose for energy and basicly pacing my activities and using a cane for stability when outside the home.

  • michelle

    Stephanie have you tried getting a a lawyer who specializes in social security disability cases? Also on social security’s website lupus is listed on their approved disabilities list so you should get it with no problem.

  • Cindy

    Stephanie, hang in there. When I started feeling really bad I quit wearing makeup for the first time ever. I also just washed and combed my hair, after I had 6 inches cut off it. I just couldn’t manage it with the pain in my shoulders. I also gained weight because I hurt too bad to walk or anything. At that point I couldn’t stand for more than 1 or 2 minutes. Later, I ordered my records from one doctor to send to disability insurance and noticed the doctor writes how you look when they walk through the door. I was 49 and overweight, and the doctor’s comment was that I looked like a typical middle aged woman. I hadn’t considered myself middle aged, but there it was. It’s hard to “let yourself go” at first. I don’t recommend the weight gain. But otherwise I just didn’t care as long as I managed to get to work. I wore soft stretchy pants and shirts. They felt like pajamas. I threw out all my heels and bought 2 pair of doc martin mary janes, one in black and one in brown. All my coworkers were asking about my health by this time because they’d all seen me cry while trying to get to my car at the end of the day. My supervisor’s office was directly across the hall from mine, and one day she stopped in and told me she was worried about me and wanted me to take off until I felt better. I went to my primary care doc the next day and she made appointments for several specialists. Two years later and I’m still home. My mind just won’t focus and I’m uneasy driving. Some days I’d have to die to feel better. Then I have a good day and I can walk to the mailbox and pet the dogs.
    I didn’t mean to make this all about me, but to tell you how my story evolved to the point where I can stay home and take care of myself everyday. I keep a pain diary and take it to the doc with me and make copies for the LTD insurance and for social security if it comes to that. Make copies of EVERYTHING you submit to either entity mentioned above, along with the date you sent it.
    Take good care,
    Cindy

  • Teresa

    I relate to this so much, as I continue to work part-time, because I have to if we want to eat, but there is nothing left for my family, either. I have been turned down over and over for disability. I’m on my 3rd and final filing, waiting for a hearing. On my 2nd try, I had a brand new judge, who didn’t know what fibromyalgia was all about. My doctor calls it a severe case of FMS. I was in a bad flare at the time, and she was very sympathetic during the hearing, but came back with a denial stating that I had exaggerated my symptoms, and that MY DOCTOR HAD ALSO. I was so hurt, angry and belittled, I still cry when I think about it. Because we push ourselves, because there is no other choice, we’re disciminated against-because we just don’t look “sick enough”. I hope some day soon, you win your case, as well as all the rest of us with invisible disabilities.

  • Barbara

    Dear Stephanie,

    Perhaps it is time to stop trying to look like you are not sick to the world outside of your home. I am surprised you were not told that you cannot be approved for disability when you are wokring. In addition, when you are that much younger than 50, the thought is that you can be retrained for a dffierent career. I was approved on the first try, but I was closer to 50 and had been on medical leave for a year when I applied. I kept thinking I would be returning to work next week, even though my doctors, friends and family knew I would never return to work. I too have multiple diagnoses, had extensive spinal instrumentation surgery, and have lots of medical documentation. At this point, you might want to hire a disability attorney. I wish you the best!

  • I’m so sorry for what you’re going through 🙁 I’ve never applied for disability but I can’t imagine how stressful this must all be.

  • Colleen

    I am in the process of applying too for disability and I can’t tell you the number of times people say to me “But you look so good” – I want to scream when they do that as they have no clue how hard it is to get up out of bed, put on makeup so I don’t look bad and I have nice hair to begin with so yes, I can look good. Doesn’t mean I feel good at all. and like you, yes, I can get up if I have to, but I don’t want to. I want to stay in bed all day and rest. That’s what I want. So….I am sorry so sorry that they turned you down, but I completely understand. Keep trying for it, don’t give up, you deserve it!!!

  • NTE

    Stephanie, I’m so sorry to hear that you’ve been denied. Your story fits so many of my own personal experiences, except they kept telling me I wasn’t sick enough because I was attending college, not working. The fact that I had to schedule my classes with 4 hour breaks between them or that I was completely confined to a dark room and my bed for entire weekends at a time. I’m wish that it was an easier process, and that it actually made sense… and I hope that your situation changes soon, because I know how hard it is to have all your (scant) energy wrapped up in that one thing and feel like you are unable to live your life because of it.

  • Kristy

    What an excellent article to explain to others that don’t understand why some don’t qualify for disability benefits. I have a number of health problems which also includes Cerebral Palsy that is mild in nature, but still finds ways to cause problems. Problems that include me now needing braces (yes, that’s right more than one) one for each foot in order to help me walk better. But time and time again I will get friends who say to both mom and I “has she tried to get disability” or “has she tried to see if she qualifies for disability benefits”. And of course, the answer to that is yes I have. I may not have actually applied but I have done enough research including on the Social Security website to know that I don’t qualify.

    I have even had to explain this issue to my mother in the past on more than one occasion why I don’t qualify when she would try to tell me that I should try for disability benefits. Simple answer I know now is to say that I am just not sick enough which is true. And is also the reason why my team of doctors although I think the world of them would never support my decision to try for disability benefits if I ever found that I needed them. I hope that by using this statement in the future along with the answer of “yes I have” to the question of “have I ever checked to see if I could qualify for disability benefits” will be enough to get others to understand why I don’t. If they don’t then all I can say is “oh well” and move on to the next thing in my life which now includes school to become a Medical Assistant and on to Nursing School, something that I thought I would never be able to do after losing nearly 15 years of my life due to the issues with my feet caused by my Cerebral Palsy.

  • I hear ya’ Steph! I had to stop working last May. Of course I was denied SSD the first time around. I expected that. What I didn’t expect was that the LTD for which my employer paid monthly premiums to cover their employees would fight me. Especially with multiple letters from my doctor saying “She CANNOT work!” and describing the daily pain and limitations this disease has caused.

    I was in tears reading your description of your work week. That was exactly the cycle I was in for about a year before my body finally forced me to stop. I had to keep pushing through the 40 hour weeks and the guilt from feeding my kids McDonalds or Papa Johns ever other day and the guilt from missing their church activities and sticking my husband with virtually all of the housekeeping and kid duties. I had to do it to keep the insurance that was treating the RA. And it was awesome insurance. It hurt to leave it.

    And after all that disease fighting and body pushing, here I am – 30 years old, married with 3 small children….living with my parents. My salary was more than 60% of our family’s income. And thanks to the hundreds of dollars for monthly meds and co-pays and all the missed hours for appointments and days when I couldn’t get out of bed, there’s no savings. Nothing to fall back on. My LTD should have started paying me in September. It’s now almost April and I’m waiting to hear from my appeal before I contact an attorney. I was lucky enough to be covered by the disability insurance company that’s been sued for bad-faith denials more than any other in the country!

    So I went from fighting my body to get through the work week to fighting the SSA and insurance company so my family might see some sort of independence again. (And of course I’m still fighting my body to get through each day has a SAHM.) I’m so thankful that we have the option of staying with my parents. I honestly don’t know what people do who don’t have family that can help during this process.

  • wow! my x wife has lupus. she has had it for 30 years. and reading this, i know so well what you are writing. she had to keep at the disability for 4 yrs. then she got it and they revoked it after 2 yrs. and then after fighting she was fully approved and received the back pay of the disability. the dr bills are a funny thing. she is constantly put into collections, even with a standard monthly payment. her latest problems have been, e.r. and urgent care visists. they find nothing wrong and say “must be a lupus thing”. how wrong. she had broncitus, treated and now pneumonia. i know how it is from the experiences with her. she looks great and inside she is 60 yrs old. hope all goes well.

  • Doug Kron

    I also got mine on the first try. I was totally prepared for a long fight.
    I have talked to people who were just as bad off as I was that were younger and it seems like Social Security doesn’t like to give it to someone under 50 years old.
    The other thing. Your still working which doesn’t show them that you need to be on SSDI no matter what it does to money or family or you…
    They don’t care.

  • DiAnna Adkins

    Wow! I also am sorry to hear your story, as well. I am in the process of applying for disabilty and I am scared that it will take forever to get it…..I need it now or as soon as possible.

    I wish you l luck; don’t give up! God Bless You..

  • Bev

    Prior to being forced into an early retirement, I spent nearly two decades in social services. I was a social insurance specialist at SSA for the last ten. (Please don’t kill the messenger. I didn’t make up the rules, I just applied them.) I can tell you, unequivocally, the reason you’re being denied is because Dr. HeadUpMyOwnHiney believes you’re not disabled. (I’m wondering why you continue to see him.) As long as you continue to apply using his records, you will continue to be denied.

    To quote Einstein, “Insanity is doing the same thing over and over again and expecting different results.”

    I mean no offense, but this is exactly what you’re doing. The medical decision (at the initial app and reconsideration stages) is based solely on medical records. It’s not based on tears you don’t cry, or what you’re wearing, or whether you have a tan. It’s based on your doctor’s records and (abnormal) test results, and very often, a statement from your employer about the job you manage to do, despite your disability. (An employer or supervisor is asked this question. “What is the value of this employee’s work?” If the answer is “more than $1000 per month”, your case will be promptly (and appropriately) denied.

    The definition of SSA disability is, a condition (or conditions) that preclude you from earning over $1000 per month for a period of one year or longer. There is also a 5 month waiting period before you can start receiving a disability payment. The problem is, many people can’t go 6 months with less than $1000 in monthly income. Do you pay into a short or long term disability program or an annuity through your employer?

    Most people can earn over $1000 per month by working 20 hours or less per week. For example, a person who’s paid $12.50 an hour and works 20 hours per week is calculated as follows: $12.50*20=$250*4.3 (weeks per month)=$1075 per month in gross earnings.

    If you believe you meet SSA’s criteria for disability, I’d be happy to share my knowledge about how the SSA disability process works and what records and test results might be helpful in gaining approval. Knowledge is the best tool. When you understand the rules, the process won’t seem as daunting. But, the first order of business should be finding another doctor who can, and will, “support” your application.

    As a retired SSA employee, I’m banned from ever representing someone “on the other side of the table”. But, I’m happy to share what I know, for free. If you’re interested, you can find me on facebook.. Beverley Balden Williams.

  • Michelle

    Stephanie, so sorry to hear your story. I got my disability on the first try, actually within 6 weeks of applying, I was shocked and so were my doctors. I guess thing as a plus was that I never had any type of face to face interview with anyone. If I had I would probably never got approved either.
    I do know that you should not be working when you apply, I had been on STD for about 3 months.
    I answered every question with very detailed descriptions. I am in the medical field, and I listed each medication with its side effects and what they did to me when I took them and explained how unsafe it is for me to even drive to work while taking the medications much less see patients.
    I hate when I hear of people so sick being denied.

  • Flaring Again

    Ditto ditto ditto. I’m in Texas and was able to work intermittent FMLA until I ran out of those hours before the next 12 months started. I am astounded by how much I hid all that exhaustion and malaise from myself as well as others – now that I’m forced to deal with UI, I know that I can’t do what I’ve been able to do for so long, and omg I am so broken compared to normal healthy people. If only the medication roulette would stop and I could get off some of the 15 meds I’ve been taking, I could probably work great again eventually. This is of course assuming I get over and stay over the allergies and colds and viral crap going around.

    I’m just beginning the SSDI journey and I’m sure I’ll be denied too but still have hope. Kinda. Not really and I know I’m lying to myself with false nope of getting through the system the first time, but life is too depressing to think otherwise right now. Lots of spoons for everyone out there from a fellow spoonie (37 with endo, fibro, familial hypertension, Sjogren’s, depression, gastritis, gastroparesis, plus B12 and D deficiencies and breast cancer in remission).

  • Kayleigh

    Every dr. should read this–well, actually, every person should, since they work w/ us, live w/ us, go to church w/ us or are related to us. They have no idea the effort put forth to look halfway decent!

    They don’t know how much we pretend to fell *better* than we are, not worse. How much it hurts the pride of someone who has always worked to say, “I can’t do this anymore. I can’t do the job well enough anymore and I have nothing left at the end of the day for my marriage, my children or for me. (Even on a day off if we have young children and little help.) Oh yes, we want to be poverty level as we have to work less and less/take disability. Either option means that we’re no longer middle class, but really poor.

    I would say “ditto” to the article, except that I finally did get bad enough to get diability, in their opinion. By then, I was much, much worse off physically, emotionally, cognitively and financially. Many marriages don’t make it–mine didn’t. Ironically, I did improve some once I got disability, because I had that basic financial stability (little as it is) and didn’t have the stress of still trying to work full-time when I really and truly no longer could.

    Great article–super writing. I know that a lot of people can relate.

  • Jeanette

    yep, I’ll join you all in the “that’s close to home”
    I’ve just had my 2nd operation in 12 months, and will more than likely have another by the end of the year.
    Each hospital visit costs half my weekly food budget in petrol and parking fees.
    Even the employment agency I go through thinks I should be on sickness benefits.
    I’ve not been able to work for the past year. I have the medical certificates to prove it.
    But I don’t look sick to them, I guess that’s my problem.

  • I’m sorry, I understand.

    I AM sick enough to qualify, but I still don’t qualify for disability. It is a hard process. I cannot work, drive, walk much. I have lost everything.

    Nobody cares.

    I am so down the cracks it’s hopeless.

    I hope noone goes down my path.

  • You’re.just.the.Best.Steph ! Fantastic job!!

    Reading this article was like a trip down ‘Eye Spork Worthy’ Memory Lane Moments for me! Especially when you have children, it’s not so easy to quit working & wait for the Disability Fairy to knock on your door with a Gift Basket. Which is full of Money, Pain Meds, And caring Physicians who work hard to treat you like a human being ! Riiiiiight?! You didn’t get yours? Me neither.

    I’m lucky I lived long enough to get Disability & Insurance. Had several brushes with death in the years without hope, and I’m here to tell you, Animals get treated better at the Vet than people without Disability or Coverage! My heart breaks to see amazing friends like you, get treated like your pain & quality of life don’t matter!!

    Well ya know what?! Your quality of life *DOES* matter! Your Pain Control *DOES* matter! YOU.MATTER ! You shouldn’t be treated like this, NO ONE should be treated like this when they are just fighting to stay alive!! You deserve better Steph, all of us deserve *better* from our Government & Our Physicians!!

    I want everyone in this situation to hold onto hope! The Healthcare Reforms are finally starting to take effect! Change is happening for the first time in decades! But most of all, please know you aren’t alone.

    Getting my Disability was about as much fun as crawling on my lips over broken glass! It was a painful, awful process. with SO many road blocks & dead ends! But in the end, you must believe you *will* be successful. Years ago my dear friend Sue was denied over a dozen times for ‘Fibromylagia’, and then a few years back it finally became a qualifying condition & she won her case! So *anything* is possible. Know you are deserving of relief & assistance, and try to hold on tightly to the belief & faith within that you will win this battle!!

    *Spoonie Group Hugs*

    I send each and every one of you my love, lotsa spoons, and strength when you have none. This too, shall pass.

    *fuzzy hugs to everyone*

  • Mary

    Stephanie, my heart goes out to you. My mother is in the same position, and we’re hoping with the advocate we got through the hospital, that we can get some help on the disability. It’s a tough spot to be in, and there are a lot of people doing it. *gentle healing hugs*

    Me? I work at a job where I am treated differently and held to a higher standard than my peers, told I don’t quality for FMLA because I work third shift, am denied ADA accommodations because “it wouldn’t be fair” to my coworkers, and try not to cry when I’m working because it makes the “tone of my voice sound less than positive”, I know if I were to even apply for disability, I’d be laughed out of the office.

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