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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  • Dawn

    Stephanie, I’m so sorry you’re going through a rough time.

    I am currently waiting for my hearing date in front of the ALJ (this is my second go-round with SSDI), and my lawyer told me something I’d not previously known about working when you’re trying to get SSDI.

    She told me, “You should not be working at all, but if you are, you CAN’T be working full-time, and you CAN’T make more than $1000 per month gross. If you’re working full-time and/or making more than $1000 a month, you will not be approved for SSDI.”

    I hope that information helps you, or anyone else trying to get the SSDI benefits you deserve.

  • Karen

    Stephanie,
    I totally understand what you’ve written because minus the children, I am right there with you. I’m 25 with migraines, uncontrolled epilepsy, and fibro and now they’re thinking something else is wrong with my back. People keep telling me to apply for disability but since I’m still working (i am the only person who supports me financially), I’m not considered disabled. It sucks because I come home from work and go straight to bed almost every night. Some weekends I can’t get out of bed either. I feel like my quality of life is none. People don’t get it either. They think I’m too young and look too healthy to be this sick. If only they really knew… Anyway I won’t ramble because you know what I mean. I’m so frustrated with feeling like I don’t have a life and there’s no hope for a future. But I’m so glad that I found this website and have people like you who get it and are encouraging. Thank you!!! And keep hanging in there. We spoonies stick together 🙂

  • Kelly

    I’m sorry you’re going through such a hard time. Then there’s those of us who are sick enough, but haven’t worked enough. I had to stop working – doctor’s orders – while I was pregnant with my son. I stayed at home with him after he was born. I thought about going back to work, but it seemed like he was always sick and I knew from experience with my daughter that when your kids are sick, your employer makes your life hell. So I stayed at home. I returned to work, part time, when he was 8. Then I got sick, so after working for a year and a half, I had to stop. Since I haven’t worked at least 5 out of the past 10 years, I don’t qualify for SSDI, even though I worked plenty of years before that period. I’m totally screwed – physically I’m only able to work no more than 4 hours a day and it has to be a sit down job. I’ll never qualify for SSDI even though I am sick enough.

  • Redcurlyhead (Krista)

    I asked you once how you do it. You replied #necessityisabitch. It ticks me off when condescending jerks tell me that I need to just get over it. I can do it if I really want to. NO. I. CAN’T. And I grew up in the hills of KY so my drugged-up relatives can get disability, but I can’t. Thanks for standing up to the jerks of the world and representing all of us. Thanks for making me smile when I need it. Thanks for not being afraid to tell it like it is. Much love and big spoonie hugs.

  • Steph, it is so hard. The whole system is hard.. You have to work to pay for medical bills etc, take care of your family… But you get sick, then you are too sick to work, seems like all you do is work and be sick… It is a horrible cycle that I hate seeing my friend in. Love you.

  • Christina

    Thank you for this. 🙂

  • rebekah

    I really have to agree with Sarah… the healthcare system in France is/was amazing. People who bad-mouth accessible healthcare don’t know how ignorant they really are. Chop
    ping off their own nose to spite their neighbor’s face.

  • rebekah

    I was denied disability when I was very visably a mess, because I had yet to be fired from a part time job I down-graded to in order to pay the rent… even though I could barely get out of the house to make it in.

    The system is very specific. If you can do anything whatsoever to earn meager pennies, full or part time, you are not eligible… yet.

    I have really been through those cracks. My story is a nightmare not worthy of rehashing in this venue… but I feel for you!! I know someone who is in a very similar boat. You might have to choose to be a bit uncomfortable for a while to allow yourself to meet criteria so that you can have a life.

    Disability is a relief and a misery. It doesn’t answer all problems.. It took me a looong while before I even could bring myself to apply. Perhaps, a change in career is due. Anything but disability. It is truly a last resort.

    All the very best to you!!

  • Hi Stephanie,

    Please don’t take this the wrong way, but I’m guessing the reason the SSA won’t approve you is because you *are* still working. The “alleged onset of disability” date they look for is generally your last day of work, or later. I suspect their logic is that if you *are* working, then you’re not disabled by their definition. They don’t care that you don’t have a life and you are killing yourself to pay your bills and stay insured. 🙁

    I’m one of the lucky ones in that I have a husband who can support my family financially. Money is unbelievably tight, and I fear for retirement because we can’t save the way we should. but we’re managing. So far.

    I’m currently in the appeal process for SSDI, so I’m definitely not an expert. If you haven’t consulted a lawyer yet, I strongly recommend it. Personally, I found it challenging to find a lawyer who would take my case before my first rejection from SSA. But you’re clearly past that point, and personally, I find it worth the loss of a percentage of any back payments I’ll eventually receive.

    Good luck, Stephanie! Hang in there!

  • kelly lynn doiron

    hi, steph.i live in canada & it took two& a half years to get my disability. do not stop fighting.it is worth it.i kept sending in the forms & i was constantly denied.so finally i went to the tribunial{sorry,wrong spelling}.it is a board of people that you state your case to.i did not have my quack doctor behind me,so she was no help at all .here in new brunswick, there is a non-profit group that helps people with their claims. go thru the phone book, call goverment departments,keep at it till you find someone to help you. keep fighting. i wish the best for you. please let us know how it turns out.

  • Ken, it is wonderful that you are able to push yourself and accomplish what you have. But please bear in mind that with certain medical conditions, pushing oneself in that way can result in becoming bedridden, hospitalized or worse.

    I was told by a rheumatologist to stop working, and I ignored him, thinking I too could just keep pushing. But I would struggle through the first two shifts of the week and end up unable to get out of bed for the other three shifts. Three months later, I ended up with another stroke-like episode which affected my speech, memory, motor skills and caused numbness from my knees down and from my elbows to my fingertips. It took four months to heal, and the motor skill trouble persisted for a year. I again attempted to work until my immune system caused pre-cancerous changes in my lymph nodes four months later. I took time off for surgery, thinking I would surely go back to work after a few weeks. But two more doctors, including a world-renowned expert on primary Sjogren’s syndrome (I have that plus other ailments), told me I should never go back. I was in such rough shape by then that I complied.

    Stephanie, I hate to tell you this, but it is true that you will never be approved for SSDI if you are still engaging in substantial gainful activity, i.e., working full time. You can apply the minute you stop working because it will take longer than the five month waiting period to get approved anyway. Also, you have no case if you have no doctor who will certify in writing that you are 100 percent permanently disabled. Due to the fact that you are under 50, you will have to flood the Social Security office with medical records that document the severe and comprehensive nature of your impairment.

    I gave Social Security documentation from 23 doctors and gave them letters from co-workers and my spouse testifying to the impairment they had witnessed. Social Security sent me to one of their own doctors, and she determined that I could not work. Yet I was denied on the basis of being too young and too educated to be disabled (I was 40 with two BA degrees). So I enlisted a lawyer who asked that my case be reviewed prior to a hearing (there’s a technical term for that, but I can’t remember what it is). I was one of the lucky ones. A judge checked my case and agreed that the Social Security doctor had made the right call. I was approved nine months after filing.

    The only other suggestion I have is to not use too many spoons on your appearance. Putting on makeup, tanning, doing nails, getting dressed up, styling hair, etc. are luxuries I gave up because I needed more energy for things like feeding and washing myself. I cut off most of my hair because it was falling out anyway. I just use a dab of baby shampoo to keep it clean – I don’t even have to comb it if it’s short enough.

    Don’t know if any of this will help, but suffice to say that judging from the number of comments here, MANY of us are or have been in the same boat. Hang in there!

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  • Monique

    OMG!

    Ken,
    I started working while I was still in high school, and continued working until I started having seizures while I was working with my doctor on his surgery days. I was no longer able to go into the OR with him, and when the seizures started coming more often, I had no choice but to give up my driver’s license.

    I managed to lose everything I had worked so hard to build in a matter of 8 months.

    Over the past 6 years, I have gone from someone who never ONCE asked anyone for anything to someone who can do only a few things without help.

    I need someone to get my drinks, my food, help me get into and out of the bath. I can not walk without either the help of a person or a walker. In 12 hours I can swell up so bad that the shirt I put on the night before, looks like I bought it in the jr/miss section of Smurfs-R-Us! I have actually told my doctor that my EARS hurt-and not the ear ache kind.

    It takes 2 hours to get ready to see the doctor, b’cause I get so damned worn out just from getting out of bed.

    I can promise you that no amount of money, from ANY where, is going to change my quality of life! If my checking account had the same balance that Trump’s does…I’m still going to be in pain all day. I am still going to have to have help to do “normal” everyday activites. I would just be doing it in a better tax bracket.

    I realize that there are those who spend their entire lives looking for nothing more than a handout. But, don’t you dare take a pias attitude that b’cause you have the ability to work and do a marathon, everyone is else has let their disease win.

    I fight every damned day…for everything that I do. I take NOTHING for granted. And while some days I can fight in jeans and a t-shirt, most of the time I battle while still wearing pj’s and barely rinsing the toothpaste out of my mouth!

  • OMG Amy I am so sorry. This just proves the system is highly flawed. Goodness.

  • Amy

    I got disability 2 yr ago; they tried to say I wasn’t sick enough. I hired one of those law firms, it was worth what I paid them. BUT…I am disabled, caregiving my husband- & THEY SAY HE’S NOT SICK ENOUGH FOR DISABILITY!!! How in the heck can someone sick enough for disability be caring for someone else sicker than they are, but the person who’s sicker is told they’re not disabled, not sick enough???
    The government is NUTS.

  • Stephanie, not sure if your even reading this. You have so many comments on here. But I was disheartened to read the ones where people took your article as you were feeling sorry for yourself because THEY have been able to overcome this or that or run marathons and work tons of hours, etc. etc. etc. I also think it is sad that people are so divided, as usual, on how we should handle our health care system in this country. What was passed last year is far from perfect, but what we have now does not work, either. This country, basically, waited WAY too long on the issue until it became a crisis and now is a big old mess. I have no answers, and I am not sold on socialized healthcare or anything like that, but I do indeed believe we need to make it better somehow. I am also one of those people who read that long health care bill, so I am informed. But still, our health is our number one asset. Without it, it is a struggle to do what we want to do. As far as that subject, I’ll let that be. It is too complicated and emotional for most and should really be saved for another article or topic. That being said, I want to address the following.

    For anyone who thinks Stephanie is feeling sorry for herself, please consider this. For one thing, this should be a safe forum for us to “complain” once in a while. After all, we cannot seem to do it anywhere else. This does not mean we are feeling sorry for ourselves. We just have to have somewhere to get it out of our systems. I think Stephanie is very strong and brave to do what she does and share this with us. We are ALL different. All of us are affected differently by our symptoms, all of us have different circumstances, and all of us have different personality makeups to go with it. Nobody should be made to feel bad just because they are unable to handle what others can with their illness. We also all have different support systems-maybe we just do not have the best doctors and have not been able to keep searching for more of them or fork out more out-of-pocket costs to continue the hunt. Maybe some of us do not have the family or friends others do to lift us up. Maybe some of us have depression or anxiety issues that are hard to manage and it makes it harder to find that very special inner strength to do better in our situation. Again, all of us are different. And I think it was wonderful Stephanie shared this with us the way she did.

    The whole “be positive” stuff and the mind and body connection is all very helpful-to a point. Again all illnesses and circumstances are different. They can especially be different for women with hormone issues, etc. as I am currently learning from one of my new and wonderful doctors.

    IN conclusion here….I think we do need to be aware of people’s circumstances in our society and it does take a village in a way. Someone on here said something to the effect of how society is not responsible for our quality of life just because we are sick. While to an extent that is a true cold fact, and just the way it rolls, it does not mean we should not be more aware, more supportive, and more compassionate and make changes so that the people like us with invisible illnesses who want to work and have a life but need a little more help, can get it. Maybe then…they can run those great marathons. If they want to. Not everyone is into that stuff =) After all that is one of the reasons why Christine created this site, correct?

    Cheers.

  • Maureen

    Hi Stephanie,
    Boy could I relate to your story. That was me about 11 years ago. I looked “fine”, and I was “always smiling” so this crap about being sick was clearly me lying for attention. I also was devastated when turned down for disability the first 2 times. I also felt mixed about it. I didn’t want to be labeled “disabled” and I also was, at that time, worried about what people would think of me. I found a wonderful attorney here in my town who specializes in disability and between my fibromyalgia and the consequent depression, I finally was awarded. However, I needed to get a letter from my doctor and he wasn’t that great but he did it anyway (You need a new doctor, sistah), I had people lined up to testify on my behalf (a former coworker) and my husband. I had to go to court. I was shaking. The judge actually wanted to hear from me directly. I succinctly told her my story (I had begun to make a lot of mistakes at work and had to call out a lot, by the way). I told her that it was humiliating for me to ask for disability benefits but that this was what my life had come to at age 33. She listened and asked me questions and I was completely honest. She never even asked to have my former colleague and husband come in and testify. She granted my disability right then and there. It took a couple of months but she made it retroactive to the first time I applied. I urge you to find a good attorney who specializes in this and if possible, in the meantime, take a leave of absence from work. By the time I went to court, I had been out of work for 2 years. I became a stay at home mom to my one year old, hardly an easy task but at least I could stay in my jammies or sweats and sit on the floor and play cars and on good days, get a nap in when he napped. Bless you and dig your heels in and don’t give up!!!!

  • Mindy-

    not sure how to contact you other than this , but its worth a shot. I had never heard of Bilateral Trigeminal Neuralgia until last week. There is a doctor in New York (Queens/Long Island) that has pioneered a surgical correction for this debilitating condition. Its fairly new, but I spoke with a patient at length while sitting in my neurologists office last week who had just had the surgery done. She woke up from the surgery in no pain. While I’m sure its not a “cure” or fix for all, it worked miraculously for now. If you are interested in more information about this doctor, please get in touch with me ([email protected]) and reference BYDLS in the subject line. It may be a long shot, and Im not sure where you reside, but it may be worth talking to him. I hope this message gets to you.

  • Diane

    I was turned down for SSDI until someone suggested a lawyer. He was wonderful. Even came to the house. He filled out all the paperwork and did all the running around that was needed. He did everything. He made sure it wasn’t stressful for me at all. I mean, he saw how depressed I was about the whole thing and I was sort of in denial, but with his help it went smoothly.
    If you can find a lawyer that helps with disability that would make a big difference for you. Good luck, I hope you can get help with this.

  • Ok, from the significant other of a receiver of SSI (through less legitimate means, since they wouldn’t give it to him for his condition but WOULD for depression WTH), good friends with an advocate, and me being undiagnosed can’t get anything at all, no matter how bad the pain or debilitating the symptoms that many people feel the same way about the disability trials you’re all having. The biggest issue with Stephanie and others is that you’re working, and they look at that and say ‘well obviously you CAN work, you’re doing it.’ (which all of us who live this reality know is absolute bull).

    The best suggestion I can give? Get a store of money together (what will be referred to from here on out as ‘the stash’) enough that you CAN get out of work, the worst part is it will have to be enough that you can float for six months or more. How does one save up ‘the stash’? You can’t. And that’s the catch-22 of it. In some cases you have to be down right near homeless to get it, completely debilitated before they’ll consider it.

    The system we currently use will generally take any means it can to get out of paying it, mainly because it is already eating it’s budget on how many it has and it’s only getting worse. All I can hope is at some point enough of us spoonies will get together to kick the system in the gob.

    Love, hugs, and spoons to all of you fighting with the disability process, or who plan to be soon.

  • I’m so sorry for the many ways in which the system fauled you. I understand because it failed me to. Even after meeting the criteria for disability & having the support of my doctor, I was repeatedly denied. Why? The ALJ felt I was too young.
    I’ve been sick for 14 years. Spent thousands of days in the hospital. Am not currently legal to drive. And yet, sadly, could not win my case even though my lawyer took it all the way to the top.
    I’m so sorry for both of us.

  • Joy

    Well looka here– it’s ME 10 years ago!
    You go girl! Join the cast of invisibly sick suffering people out here who understand EXACTLY what you say…
    …Who work 9 to 5 then almost fall asleep at the wheel afterwards, on the way home to injections and BED…
    .. Who eat from cellophane bags (IF there’s enuf energy left to tear one open)….
    And who– through the miraculous power of chemicals and modern medicine– shoot up, swallow, and absorb whatever “magic” allows us to fool ourselves and the “world” that we’re capable working folk doing our job. LIFE? NO LIFE, just work!
    Until one day when you can’t do THAT, either. Aw shucks!!
    Thanks for sharing a familiar story. We all have our own road to travel. All we can do is make the best of the trip, however BUMPY the ride!!
    jsj

  • Stephanie, I don’t really know you yet, but I want to know you a lot! Not for myself because at 68 years of age, I count myself as one of the very blessed with relatively good health for my age. But, my youngest daughter suffers from debilitating migraines and not one a month, but sometimes one every other day or one daily for ten days at a time. Those migraines can leave her virtually disabled. Like you, she struggles to get out of bed to a job that provides her with enough money (barely) to cover her medical costs and her monthly bills. Her husband – bless his heart – is one of the most supportive men I’ve ever seen and I try my best to be available for her at all times. Even that is not enough when you’re the one who wants to put your head through a concrete wall if it will get rid of the pain. She doesn’t look sick and has been told that many, many times. She works some days with no sympathy or compassion from her co-workers because “you look just fine”. How many times in our lives have we heard the phrase “looks don’t matter”, and yet in this world of silent illnesses, they do matter.

    Bless you, Stephanie, for writing and giving us a place to share and a place for others to maybe understand.

  • Jennifer McNeal

    I’m proud of you all ladies!! Thanks for reminding me that the Kens of the world are simply uneducated misguided souls that have no clue. They most certainly don’t have the right to judge. I am not ashamed of getting disability. But you, Ken, should be very ashamed for speaking without any knowledge. Use this as a learning experience, Ken. Educate yourself. Then come back and apologize to Stephanie and every other person that comes to this site for support not to be looked down on.

  • Melanie

    Im still waiting on whether im approved for SSDI. Its being ‘deliberated’ now. Im worried tho bc my rheum at the time i started the filing process doesnt support disability. For anyone. i did see one of their docs. a shrink. hopefully she saw the toll it takes on me daily. we’ll see.

    i worked as a nurse for a few years. full time which meant 3 days a week. usually those days were split tho. and i worked nights so my days off never really felt like days off. when i started getting ‘sick’ (ra) i tried to keep working. but nursing is hard on the body. after 9 months i dropped down to part time and started doing 2 days a week. i would set my schedule to where every couple weeks id get 8 days off. id spend almost all of them trying to recover from work. after a year of part time i dropped to 1 day a week or even every 2 weeks. that lasted 9 months and i finally quit.

    i dont know how you do it. can u change drs? can u get support from family and quit and file then? (even just taking fmla at first) im so sorry u are going thru this. its so hard to have these invisible disorders. you are in my prayers stephanie.

  • kirsten

    i was referred over here after i posted a “but i dont look sick” post of my own on my blog.
    you totally need to get a new doctor.
    but do bear in mind that even with every doctor in town going “yes give her disability” they WILL turn you don. they turn everyone down the first or second or third time. they want to see if you will give up and go away (or die)
    good luck, and i strongly suggest letting the next doctor see a bit of the reality behind the facade….even if you dont show it at work.

    (oh, and may i strongly suggest you look at scarves? teasing your hair takes a lot of energy i am sure.. a scarf every couple of days would save you some spoons… i go to the Jewish webpages and look at the instructions.. i am very fond of the Dutch Crown on tznius dot com)

  • Sarah

    Replying to:

    “Kris says:
    March 26, 2011 at 3:05 pm

    […]
    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? […]”

    As an extensive service-user of the UK’s National Health Service, I would like to challenge every single word of that statement. As someone with multiple health issues including HMS, a seriously damaged spine, and years of gynae problems, I have nothing but praise for the NHS. Every hospital stay has resulted in a good outcome for me, I’ve had specialist teams of consultants, physios and Occupational Health helping me to resume a near normal life with my HMS, several successful operations to deal with gynae problems culminating in an elective hysterectomy. had numerous visits to Accident and Emergency where I was seen and treated in reasonable time. My prescriptions are all paid for by the state.

    The only people in this country who claim that the health service is ‘broken’ are part of the right-wing political agenda, who wish to see the health service privatised to make profits for private companies. The needs of the people are not top of this agenda, capitalism is. Under the investment of the previous Labour government, the health service has improved in leaps and bounds. Tory cuts will put this into reverse, purely to give evidence to their claims that ‘the system is broken’.

    Please do not take media reports generated by companies owned by Rupert Murdoch as evidence for anything that happens in the UK. Try The Guardian newspaper instead.

    Thanks

  • Leonie Hitchenor

    Ah Ken,
    you’re missing the point. Will pushing yourself harder & harder make you so sick you are completely bedridden & eventually you get to the point you never recover? (Where I am now) Will it kill you? Lupus can kill, so can other chronic illnesses like this if you handle them incorrectly. As well as the dreadful pain you suffer in every part of your body do you also feel horribly sick every day so you can barely move? Not every illness & disability can be handled with stock standard one size fits all treatment. I hope you can continue to push yourself like this. I wonder how long you have been doing so. I also wonder if you have children you have to care for…

  • Cecil da Diesel Jockey

    Hey, I understand. I do. My hubby, passed away, tried for a dozen years to get SSI and kept getting turned down. The Xrays were painful to look at, let alone have in your back. His vertebrae were so messed up, and he puzzled the doctors who thought he should be paralyzed. Then he had a heart attack. It killed a quarter of his heart muscle. And got turned down again. He didn’t look sick either. He looked vibrant and healthy. And he refused to cry, except when he was home, and even then he wouldn’t cry for himself much. He couldn’t stand, couldn’t sit, couldn’t walk and couldn’t lie down, that he wasn’t in pain. He never parked in the handicapped zone. He never wanted the blue card to ID himself as handicapped. He was too proud.

    His case finally went to a hearing. The date was set. We were looking forward to going and having his case heard by someone who would have to look him in the eye before they turned him down again. And much to my surprise, he won! He wasn’t surprised. He wasn’t anything. He was dead. He died 2 weeks before the hearing, and I was able to go in his place, on behalf of our kids, for his benefits.

    They gave him SSI but only for the heart attack. They would not acknowledge the back condition. That would involve way too much money. So the family got a smallish lump sum and the kids got a measly $86 a month each for survivor benefits.

    I went to work. I worked days, I worked nights. I worked harder than I’d ever worked. I drove a truck for a dozen years. The abuses from the companies, the lack of protection from the labor department (being trucking is exempt from Fair Labor Standards), all of it was wearing on me. I had insurance, but I couldn’t use it. You can’t really go to the doctor on the road. And when you’re home, you need an appointment. The company made sure I missed all my appointments.

    In the end, I suffered from job-related stress. My BP shot up to levels unacceptable to the DOT. I knew I wasn’t feeling well, and suspected BP. The company, as soon as I told them, made me go get checked. I went to an ER. And the next day, I was sent home some 2000 miles by train. I had to leave nearly everything I owned behind, including my hubby’s CB radio. The company had a driver pick up my truck. They cleaned it out, and threw my stuff away.

    I was suffering from depression, anxiety, BP and stress, not to mention the effects of breathing too much diesel combined with self-medicating (smoking cigs) too much, as much to relieve the boredom as to stay awake for long periods of driving. I am broken. I wasn’t given ST disability, can’t qualify to drive again, and not old enough to retire. The co. terminated me 3 months after I went home. I just feel like if you are working and get sick like this, you should get disability. I was shocked when this happened, but I gotta live too. I didn’t do anything to cause this. The company did. When my boss tells me I should do something that’s both illegal and unsafe, and it could cost me my job or my life, I get a little stressed. You might smoke too. There are worse things you could do….

  • pamela

    the saying “but you dont look sick” is something ive had to deal with for, ten years. i was diagnosed with multiple sclerosis when i was 19. i actually have heard numerous times you dont look like someone with ms and ive heard if i were you id take a gun to my head. im sorry that you are having to deal with this. i hope that ur dr listens to you and your able to get ur disability.

  • Cathy

    Stephanie, I am right there with you. I “look” too good to be sick. I don’t know how to be any sicker. I work my 9 to 10 hours a day, come home and crash. In a way, I’m fortunate because I live alone but at the same time, it means I have to do EVERYTHING. Hence, my apartment often looks like a bag of clothing and newspaper exploded.

    Hang in there sweetheart!

    (I was going to comment on Ken and his “stop feeling sorry for yourself” attitude but no, it’s not worth the energy it would take to type something.)

  • lupusgirl

    WORD. Brilliant and amazing. Thank you for speaking my mind.

  • Jannice Genaux

    First off, a comment to Ken – Disability is a handout? Oh please, spare me. When I was able to work I made more in 1 1/2 weeks than I get each month on disability. Quality of life? That’s bs too. Having to beg the State for the $43 a month in Food Stamps brings me so much joy!! Now, on to the really important thing, which my friend, is not you.

    Stephanie, I totally understand your frustration, and hope that some day your doc gets rid of his severe case of ‘cranial rectosis’, another invisible but very audible disease other wise known as ‘Head up Ass Syndrome’. I was one of the lucky ones, there were over 5 inches of med records from just 1 of 5 doctors that were sent to Social Security. But it took me loosing the majority of the use of my hands due to RSD and Raynauds that actually did the job. I went from working 3 jobs to not even able to brush my own hair and my hands turning blue in a matter of weeks. Please, as others suggested, try and get one of your other doctors to help. Someone like a neurologist or one of those other ‘ologists’. Don’t quit, because quality of life means at home too. And that doesn’t mean praying to the porcelain god every day. I watched my mother fight to get her disability, and not even dying twice in 12 hrs did that, or the years of dealing with MS and arthritis. It took 5 years and 4 court cases to do that. Don’t give up. You are just as important as anyone else, and you are just as sick as others. Just because it doesn’t show, or people like Ken think everyone should be as mobile as he seems to be (and good for him for staying that way), not everyone is the same, not all illnesses are the same, and not everyone deals with pain and side effects of medications the same. I applaud you for the grace, courage and understanding that you show every day.

    You can find me on FaceBook at Jannice Schairer Genaux

  • PamC

    I started out only with the diagnosis of migraines, but it was impossible for me to work. I’d already gone past the point of “I can do 8h, but nothing else”. I had a job where they didn’t mind if I rolled in at 11 because I couldn’t make it out of the house until then. But then came the dot-com bust, and I learned that I qualified for the definition of “disabled” several years earlier… and if I’d been told that, well maybe I could have been diagnosed before things went catastrophic.

    I’ve never been able to meet a rigorous schedule of 9-5. I can’t. Not even if I take absolute perfect care of myself. And if I try to push myself, all I end up doing is leaving my smear-print on the pavement.

    I know your struggle, you know I do. But dear god, what I would give to be stable enough that an employer could actually *rely* on me??? Do you know what kind of self-esteem I’d regain simply by being self-supportive again? I don’t care if I couldn’t do anything else… that’s what the weekends are for.

    There’s very little I wouldn’t trade to be functional enough to get off SSDI. The government, in there eternal wisdom, doubled what they take from my benefits every month because the economy is bad. How do I make up that shortfall? It’s not like everything else has gotten cheaper, and certainly not my meds (Medicare only covers 6 pills/mo, which is a week’s supply, and at $36/pill…. why? Rationing, plain & simple). Not to mention the doctors I just. can’t. see. because they don’t take Medicare.

    I’m doing everything in my power to get off the government dole. It’s a nightmare you don’t want for as long as you can put it off. If I could have put it off longer, I would have.

    Jealous.

  • Mindy

    AMEN! This is exactly what I am faced with. Denial after denial. Bilateral Trigeminal Neuralgia (type 1 & 2) for 15+ years. I’m a 40+ year old white female…you don’t LOOK sick…GET TO WORK. We don’t care if you can’t hold your head up. We don’t care if you are grabbing your head and begging those around you to kill you. We don’t care that you need pain meds in order to not blow your head off. YOU’RE 41, WHITE, AND FEMALE…GET CRACKIN! We’ve got alcoholics and drug addicts that we need to approve, kindly step aside.

  • Dee

    KEN- congrats to you and your contribution to society. Your lucky to have an ailment/condition that allows mind over matter. Unfortunately, Lupus does not work that way. Stephanie wants to live her life, not work to live. She is someone that would choose sacrificing her career for quality of life as a last resort. So, forgive her for wanting what everyone else takes fir granted – living. Forgive her for wanting to take care of her kids vs. them taking care of her. This forum is one for support, encouragement and empathy. Something you are clearly incapable. As a mother with Lupus who does nothing but work and barely make if through my days and weekends. To my poor husband who spends his weekends watching me sleep the days away and to my 4 year old who brings me my meds and begs me to stay awake. I empathize, for Steph and anyone in the same situation. She is an inspiration to all of us, charms us with her wit and NEVER pulls the pity card. So, forgive her for being human and wanting normalcy for herself and her family.

    As for mind over matter etc., I assure you that if that was the “cure”, Stephanie would have made millions and this forum would not need to exist.

    That said….if you are not going to inspire, enrich, educate or entertain this community….we have enough haters to deal with. GO AWAY.

  • Courtland

    Courtland (Steph’s husband) here again. After reading all the POSITIVE responses to this article and all of Steph’s articles I want to thank all of you for adding so much to Steph’s life. You all are an amazing support system to Steph and our family. You help to give perspective to let us all know we are not in this alone. Thank you!!!

  • Francisca

    Hey guys! I really enjoy bydls articles. My MG flare has me on a now 5 month involuntary sabbatical and the web is a great companion. But I’m finally seeing the light at the end of the tunnel and hope to be back at work in June for another ski season at Portillo, Chile.
    Regarding Ken, whose post I missed, I want to make a reflection on all the Kens in our lives, those people who can’t get past using others as their “medicine”. Since they will not disappear, I’ve learned to block them out of my life. They DO drain my needed spoons.
    Better health to all, and above all, good humor!

  • GinaM

    Keep giving them doctors and paper pushers hell until you get your disability, Steph!

  • First off, and most importantly, Stephanie, as I have said before and will infinitely say, “you are an absolute inspiration.” Nothing less but a miracle. Another wonderful article and unfortunately some people just “don’t get it,” and never will.

    I would suggest going to another one of your other ‘ologists to see if they will back up your attempt to file for Social Security disability. Also, going through a lawyer is a wonderful option. I was approved before I was even eligible to receive my first check. If anyone wants more information on how using a lawyer to file for SSD works, please either friend me on FaceBook (Miranda Stein from NY) or email me at [email protected]. Its much easier than you think (not to be approved, but the actual filing process).

    Now, I have to address the Ken issue. Yes Ken, you are an issue, and nothing more. I think those spoonies that know of me will attest to the fact that I never speak badly about anyone, but you sir, are another story.

    Im not going to list my diagnosis’ to you, there is no need. What I will say to you is that I do in fact have a spinal condition (albeit it MUCH more severe than yours, but please note I’m not going to deny the fact that you either are or have endured pain). We all have different conditions, some more severe than others, but also all of us have different pain tolerances. What hurts you may not have the same effect on someone else.

    I am irate at the fact that you just jumped on this comment link and belittled a person that you know nothing about. She struggles to LIVE every day. Congraduf***inglations that you can run a marathon. I was a 3 sport collegiate athlete, but i’ll never be able to run again (and I’m only 29). No, I’m not lazy, I AM SICK! Until you live a day in her body you have no right to criticize her and tell her she is weak or lacks motivation or will-power. I’m so happy that you are holier-than-thou.

    The reason that all working Americans pay social security taxes in every paycheck is so that if we become disabled (and please don’t be that ignorant to think that you have to be in a wheelchair and paralyzed to be considered disabled, just check out the ADA’s website for more information) you can be financially covered. Its why the system is there. Every working American gets an annual statement from SSA telling them “if they were to become unable to work due to a medical condition, your monthly payment would be $X.” Stephanie works and has paid her dues, many times over. Just as I did. When I had to have my 3rd spinal surgery, I had to go out on long term disability. I had paid into the system. It’s not as if “society has to pay for me to sit on my ass all day and be sick.” It’s an insurance, Ken.

    Lupus, MS, Fibro, Endo, etc are REAL illnesses. Sure, you can’t see many of them, but they are there. I bet you if you had a daughter or son and they had Lupus and you saw them suffering and literally having to crawl to the bathroom due to the intense pain, you wouldn’t have the heart to tell them to “toughen up, fight harder and deal.” Until you have a loved one or are in this position, you have absolutely no right to judge.

    I pity you, for every word out of your mouth is just ignorance. Or maybe you are just lucky enough to have that “tiger blood” that Charlie Sheen has, you two seem to be on a relatively similar sanity level.

    People die from these diseases every day. We fight just to stay alive, we shouldn’t have to fight to get proper care or financial security. Next time, do a little more research or maybe have a little sympathy before you are so quick to jump to such a strong conclusion. And if you want to hash this out, you are more than welcome to email me too.

    Love to all the spoonies that are fighting the good fight. Don’t let the muggles (or the Ken’s) get you down.

    Miranda Stein (from NY)

  • Caitlin

    I like the fact that you talked about how you work a full-time job. Honestly. Because this whole “invisible illness” thing has really thrown me through a loop. I don’t have CFS as bad as some people. I go to University. I work full-time in the summer. I struggle. I push myself too hard, but I get it done and I sometimes even do a good job. Of course, I go to bed earlier than my friends’ KIDS, I haven’t been out for drinks in, quite literally, two years, I have no social life whatsoever, feel like I’m honestly dying some of the time, and feel like…I mean, when you feel like crap ALL of the time, and people keep asking you “how’s it going” as just a casual greeting, I can’t honestly say I’m good or fine anymore, so I shrug and make a silly remark to shrug it off because socially, it’s just not okay to say that you’re exhausted, in pain, etc. every single day. Your whole weekend routine, end of day stuff–I can relate to that.

    One of the things that really gets me is that I don’t think I ever -understood- how bad invisible illnesses were for the people who have them, before I got CFS. I knew, I had sympathy, but I would never have believed that every second outside of bed consisted of constant effort.

    I’ve had symptoms for three years, and only in the past month did I seek support from Disability Services at my University because I didn’t think I qualified. They’ve been supportive & understanding & helpful and two weeks ago was the first time that I felt that my illness had been validated, in three years. I really hope that you experience headway in your endeavour to get approved, because I KNOW that what’s going internally can be such a violently different picture than what others are seeing, and that’s not your fault.

  • Chelle

    Any regrets yet Ken??? Not only have you insulted Steph, but you have insulted those that share her struggle on a daily basis. She is a strong voice for a community, but an inspiration for many many more. Look at all the comments of those living a similar stuggle, one which you obviously can’t relate to, and hang your head low. You should be ashamed. Please note that there are 3 important comments missing though. They are those of the three most important people in her life. The three forced to live with the effects of her vicious disease whether they want to or not. They are being robbed of a mother who fights a daily struggle to go to work to provide for them and cover medical expenses so she can continue to stay alive for them. Too bad that she doesn’t have the strength at the end of the day to sit through their softball games, kick the soccer ball around the yard, or walk the stairs to tuck them in at night. She’s alive. What more would a kid ask for?? Well, that’s the way the system says it’s going to be. And for the record, I HATE that the system is so broken.

    Steph, you know if I had three wishes, one would be for you to live the life you deserve. You are my hero and my inspiration. On my bad days, I remind myself that they are your good days. You are one of the strongest women I know. I am thankful to have you in my life. Please remember the wise words of a very smart, not to mention snarky woman…QUACK QUACK!!

  • Crystal

    When I went for my disability I made sure I talked to a lawyer first, he helped explain a few things like being very specific. Michelle mentioned that as well. When I had brain dead days and was like a little kid I still filled out the simple questions, on a better day I filled out the rest. It looked like a 2nd grader had been writing.
    If possible flood them with paperwork, I had daily pain and symptom charts I’d kept for nearly 2 years.

    I hope you and anyone else going for disability gets it. It has made such a difference for me, being able to afford to see good Dr’s and being able to afford my meds. With the right meds I’m doing well enough that next year I might try a part time job.

  • Dear Ken,
    The simple fact that you CAN still work is great for you. Don’t judge those of us that cannot. If you actually were a dedicated reader here you would have read Steph’s many other articles that show her struggles and the fact that she is not reaching out to get disability to have a good quality of life. To say she has no stregngth is pure ignorance, she’s probably the strongest person I know!
    Keep your head up Steph!

  • Charlie

    Simply put, some people aren’t born with the intelligence that God gave an orange — and this asshat Ken is one of them. What a major league d-bag!

  • I love you guys. There’s not much more I can say. I love each and every one of you to pieces. You keep me sane and you keep me strong.

    Thanks is not enough sometimes.

    <3

  • Steph
    I know exactly how you feel. I was working so much that all I did was work and sleep (well call it sleep but it’s really tossing and turning with the occasional unconscious period) and then I just couldn’t do it anymore! I’ve been on long term disability from my work but starting the process for disability.

    Ken
    You, good sir, are an unfeeling unempathetic spoon-sucking git! You may feel all inspirational but what have you done for anyone lately!? Steph helps people everyday through this site and her kind words and actions. What have you done lately to help the chronic illness community you claim to belong to, other than judge and belittle people’s essays. I don’t know if you realize the courage it takes to put yourself out there like Steph does EVERYDAY!
    Maybe you should think before you type!

    ChroniclyRandom

  • Angie_stl

    Umm, Steph, I think you may have a fan club 😉 One stupid, ignorant ass out of 100 hundred people? I think you’re doing a pretty good job for that kind of support. Love ya girl!!

  • Greetings Ken, I hope you feel pleased & proud that you took the time to enter a loving & supportive community, to demonstrate a hateful & sarcastic disposition. I’ve spent many years running my own active Message Forum, and there always seems to be someone like you that just can’t stand the Positive Energy. We like to lovingly refer to these people as ‘Trolls’.

    There is simply no good reason I can conceive of that warrants the type of vituperative verbal assault you slung at my dear friend Stephanie.

    I have Lupus/Sjogren’s/RA/Endometriosis & more. I won a similar battle as Steph’s with Disability a couple of years ago. If it wasn’t for Steph & Christine, and all the other Spoonies here at ButYouDontLookSick.com I may have given up my fight against these Evil Diseases long ago! Their ability to share, cry & even laugh at the things that ALL of us feel on a daily basis, gave me the courage to continue fighting!!

    I thank the Universe every day for Steph’s presence in my life, and my heart aches to know she is still struggling to get her Physicians to support her Disability Claim before she burns out completely!!

    I marvel at her will to Survive, and her energy gives me hope when sometimes I feel there is none! As you can see by the plentiful responses to your unwarranted jabs, we ALL feel this way about this remarkable woman!! Just knowing you aren’t alone, can make all the difference to people like us who struggle just to be able to still feel like we’re part of the Human Race!!

    Not sure what good reason could you have for wanting to malign & belittle such an open, honest & passionate lady. I don’t know about you, but I was raised to close my mouth if I had nothing kind to say. Perhaps you missed that life lesson?

    Here at ButYouDontLookSick, we love, we cry, we laugh, we rant, but we NEVER attack each other!! That’s not what we’re about, and if that’s your thing maybe this isn’t the right Support Community for you?

    In my heart, I feel that you owe Stephanie a heartfelt apology for your attack on her character, morals, and intentions. But in lieu of a sincere regretful expression on your part, I offer my own apology to Steph, on your behalf.

    Stephanie, I am so sorry there are people in this world who take pleasure in causing pain. WE KNOW who you are, what you’re about, and how strong you are in ways upon ways!! Know that Ken is at a different place than you in his journey, and do not allow his negativity to touch your beautiful heart for a moment more. I’m here today because of Y O U!! In my book that makes you special & beloved beyond words! You DESERVE Disability! You also DESERVE an improved ‘Quality of Life’ as an American Citizen who has paid taxes & is entitled to a modicum of relief while you struggle to stay alive!!

    I believe in you Steph, and I support you, in all that you do in our Universe. *tight hugs*

    Ken? I’d like to share with you with a favorite quote of mine to ponder;

    “Selfishness is not living as one wishes to live, it is asking others to live as one wishes to live.” ~Oscar Wilde

    Also some ‘Reading Material’ for you Ken,

    By Nick Kristof at the New York Times about the Death of Lupus Patient Nikki White. Nikki lost her life in 2006 because she was denied Disability REPEATEDLY until it was too late for Physicians to help her!!

    http://www.nytimes.com/2009/09/13/opinion/13kristof.html

    Attitudes like the ones you expressed, are why beautiful Nikki is no longer with us. Please consider our lives are worth much more, before you belittle the efforts of a desperately Chronically Ill Individual.

    Quiet Blessings To All Spoonies!! Hero’s every one of you!!

  • Erin Talley

    Another great article! Ken is an ASS!

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