When You’re Not Sick Enough

 

Before I even get started with this article, let me state for the record, that for those who have been approved for short or long term disability, you deserve it. You’ve suffered just as much, if not more than any of the rest of us and I do not begrudge you a thing. In fact, I understand that it’s a double edged sword. You aren’t happy about the fact that you need disability, but to simply survive, it is much needed and warranted.

Now, that being said, I wonder sometimes exactly where and when I fell through the proverbial cracks. I have a diagnosis. I actually have five diagnoses. I have the MRIs and CT scans to prove the 90 year old woman inside is cleverly disguised as a 37 year old female powerhouse on the outside. I most definitely have the monthly medical bills, which probably will be finally paid off by my great-great grandchildren, to validate my repetitive emergency room visits. I have all of this and more, so why do I keep getting denied disability?

Simple.

I’m not sick enough.

That statement is quite an emotional conundrum to me, as I don’t know whether to laugh till I cry or cry till I laugh. How in the world can I not be sick enough? How can the tears I cry alone in the early hours of the morning because I know it’s going to be a struggle to even get out of bed, be belittled to the point of humiliation? I had so many questions swirling around in my head that it was making me dizzy until a former rheumatologist of mine, let’s just call him Dr. HeadUpMyOwnHiney, gave me the cold hard truth as apparently others saw it. I didn’t look the part.

Thus befalls the curse of the invisible illness.

I have been turned down for disability more times than I even care to share with you all. I have begged, pleaded, cried and would have gladly paid someone off, but the answer is always the same. “You are still able to work a full time job.” Yeah, I can. I can most definitely work a full time job. I can even get up at dark-thirty and drive an hour to said full time job, where I end up putting in a 10 hour day fueled solely on caffeine and Skittles. I can also come home, never cook for my family, never play with my children never put my son to bed and say his prayers with him as I kiss him goodnight. I can’t do that because I can’t climb the stairs at the end of the day. I come home and go to bed. I stay there until the entire process starts anew the next day. And weekends? Forget about it. Very rarely do I even get out of pajamas for the entire 48 hours of the “weekend”. (If you could see me, I would be doing air quotes as I show off my perfected eye roll). My body is broken, I’m sick more than I’m not and until recently the “Sunday” part of my “weekend” was spent with my head in the toilet due to one gnarly shot of chemo.

No, I absolutely am capable of working. I work my rear end off for the craptastic insurance I have that left me with thousands of dollars of medical bills and a penchant for passing on much needed testing because I can’t afford the out of pocket part of my deductible.

Here’s the stripped down truth: That healthy glow I have is self-tanner. It’s a nice orange color that makes me look like I’ve been rolling around in an open bag of Doritos because the rash underneath mixes with the tanner. I’m thrilled that my skin shade of “Oompa Loompa” impresses you. The bouncy volume in what’s left of my hair is a direct result of 45 minutes of teasing it with a fine tooth comb so much that Peg Bundy would be jealous of the height. The sharp business suit I wear to the doctor’s office is because apparently it is frowned upon to wear sweats, t-shirt and flip flops to work. You know…because of that “fired” thing that I try to avoid. And finally, that strong put-together exterior that just stares intently at you (I’m talking to YOU here, Dr. HeadUpMyOwnHiney) as you tell me you will NOT agree to support me in any litigation for disability, is because I won’t give you the satisfaction of using tears to prove my pain. I save those tears for when I’m alone in my car outside your office, where you can’t see me…where no one can see me.

I’m constantly reminded of the phrase “looks can be deceiving” because I live it everyday. I will continue to push myself until something gives, whether that be THE system or MY system, because I just don’t have any other choice right now.

Because I don’t look sick.

 

Article written by Senior Editor, Stephanie Kennedy.

Stephanie lives in Fayetteville, NC and is the mother of 3 always hyperactive and occasionally adorable children. She was diagnosed with Systemic Lupus Erythematosus in 2001 and in the time since, has added Scleroderma, Hashimotos and Celiac diseases. In her day-to-day life she is a Community Relations Specialist (aka, marketing and creative hodgepodge facilitator) and a part-time blogging snarkzilla. She can always be found somewhere in social media-land causing some sort of trouble. Find her on twitter at @steph_in_nc or on facebook at Stephanie Welborn Kennedy.

©2010 butyoudontlooksick.com
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  • Beth

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

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

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

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

  • Kathleen

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

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

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

  • Holly

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

  • Bella

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

  • Shanna Balcazar

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

  • Acengland85

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

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

    Good luck to you.

  • Jen Bourne

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

  • Debe_999

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

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

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