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?


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.

  • williams

    Only God knows how happy i am for this treatment and cure i got from this clinic, i have been suffering from chronic systemic lupus for over 25 years no cure, i use different kind of medicine which gave me a side effect without cure,until this very last Month that i came across this clinic online that deliver their herbal medicine to me which finally cure me without no side effect just 2 weeks medication, am now free of systemic Lupus. I am not promoting his book, but I feel it is a must read if you want information on how to beat this awful disease.Anyway,their email : ([email protected]) God bless!

  • PAwitbPOTS

    I have a condition which prevents me from remaining upright for more than a few minutes at a time– otherwise I will either pass out or end up with a raging migraine where I can’t speak. In addition I have a brain mass that the Drs are “watching for now” because removing it is extremely dangerous. As a result of the mass I have double vision, dizziness and vertigo ALL THE TIME, which you can imagine makes it difficult to drive, work, use a computer (thank goodness for autocorrect!), etc. oh yeah I have epilepsy which is probably triggered by the lack of bloodflow to my brain when I stand up. I have partial seizures a few times per week but honestly I am not disabled by them. Not being able to stand up to go to the bathroom or make my kids a sandwich is disabiling. Not being able to keep my eyes open while riding in a car because of my vision issues– that’s disabling. Forget about being able to go to work…I can’t get off the couch most days. What I would give to be able to work again– I can’t even tell you!!!

    But yet I just got denied SSDI benefits.

    I am eft with a lot of question, the primary being “How the HECK can I work if I can’t stand up or even see straight?!”

    Good luck to everyone who is disabled here– either by the SSA’s eyes or their own!

  • LLB

    Everybody on here needs to be VOCAL about what they are going through due to the reason below. Seriously, y’all.

  • LLB

    And the conservatives say we really shouldn’t have so many people on disability because they are just lazy and should be working.

  • MoMo

    Myself and my kids. My husband left because he’s not a real man and now I finally got a rare genetic disorder finally an answer! now he wants to be nice because now I’m not faking it!. Genes don’t lie. BAH! if you left me while I needed you trying to figure out this lifelong illness. diagnosed at 41. Then I don’t need you now or ever again. It’s sad people think they can throw us around as if our feelings don’t exist. I lost EVERYTHING(HOUSE, CAR, BANK ACCOUNT, AND STORAGE UNIT CAUGHT ON FIRE, SO EVERY MEMORY I CAN’T REMEMBER ANYMORE IS GONE FOREVER) SO SAD AND I LOST EVERYONE(FRIENDS & FAMILY)! EXCEPT MY KIDS. THEY’RE MY LIFE. unfortunately THEY LIVE WITH IT TOO JUST ON A VERY SMALL SCALE SO FAR THANK GOODNESS. IT’S ALMOST 3 YEARS BEFORE I GET A DISABILITY HEARING AND I CAN’T WORK ANYMORE. I CAN BARELY WALK FROM A CAR TO THE STORE. I USE MOTOR CARTS TO GROCERY SHOP IF I GO. GOOD LUCK TO U!!! I HOPE IT’S BETTER THAN MINE.

  • Chelle1967

    I have to say I completely feel for you all. I was approved for SSDI after applying in Feb was approved by April and got my first payment in August. On the other hand my daughter has a rare autoimmune disorder, and recently dx with fibro, OA, pyoderma gangrenosa on top of the PCOS and Acne inversa or hidradenitis suppurativa. It took me fighting hard for her, even so far as sending color photos of her open wounds including an abdominal incision that came completely apart 6 weeks after surgery. She’s had a total of 17 surgeries, real ones under anesthesia never mind the small local anesthesia debridement ones. It took 4 years to finally get her approved. My brother in law who has worked hard all of his life has a horrible disability most days not even able to get out of bed and had an attorney and was denied, he was told at his last hearing by the judge to go back to work, there wasn’t enough wrong with him. He has a good heart and means well but he comes across as a know it all or abrasive and people who do not know him judge him on a personality trait. I helped him refile and he got his first denial from that filing the other day, he tells me that we have to call to be able to appeal. Might not be approved to even appeal? I have not seen the paperwork as of yet so I don’t know. My husband had 3 strokes in 5 years and he was approved the first time as well. But because he had my help in filling out the paperwork. It is unfortunate that we have to go to such lengths to be able to use what we’ve paid into for years. He has pretty much lost everything he worked his whole life for and why? Because he doesn’t “look sick”. Until someone has experienced chronic pain or chronic illness they truly can not understand.

  • Sherri Johnson Childres

    This echoes my life experience with RA along with interstitial cystitus, angina, fibromyalgia, retina issues that are aggravated by some of the many meds. I was diagnosed with RA in my early thirties and I am now 60. Still struggling everyday to get up and go to work so I can have insurance to pay for doctors and meds that I need to get up to go to work. Awful vicious circle!

  • Daisy Rothschild

    So well written, and so true. Glad to find others, because you sure can feel alone.

  • Daisy Rothschild

    I too, had severe endometriosis, at 19 I’d had surgery to remove a cyst, and by 30 I finally had convinced an OB/GYN on a full hysterectomy. It’s very hard to convince a male doctor that you are NOT going to change your mind about having kids. I had to sign a waiver not to sue. I didn’t regret it one day, not one. The relief was worth it. Keep looking til you find someone reliable, professional, and listens to you.

  • Daisy Rothschild

    I don’t know… unless that is your experience, my recent experience last month is that it is not. Not by my judge, anyway.

  • Daisy Rothschild

    …and, don’t do it. I was told pretty much the same, but it took 1 year to the first rejection, then another complete year to get the appeal rejected. Just sent in the last appeal, but doubt it will do any good, even with an attorney. It depends on what your disease is, and check into if it’s one of the ‘approved’ diseases they consider valid. Fibromyalgia is not one of them, as there is no specific test.

  • Debbie

    I’m so sorry….I could have written this myself…I totally understand. I’m sitting here now with wet hair, half dressed, because I didn’t have the energy after my middle of the day shower to even get dressed and dry my hair. The shower took all my energy. I was supposed to go out tonight to celebrate my one year anniversary since my open heart valve replacement surgery that was supposed to “fix me” and I don’t even have the energy to go. Other health issues (inflammatory bowel disease) take away whatever the heart “fixing” has given me. I understand….and I cry with you….alone, because my husband got tired of having a sick wife, so he divorced me. Hugs to you…and all the others.

  • Rhonda Worley-parsley

    One of my doctors (married to a lawyer) told me to write down all of my documented illnesses. I did…all 28 of them…and I was approved immediately. I think it depends on how concisely and thoroughly issues are presented. I also knew exactly what my medical records said. I got a call from a SS worker saying they wanted me to see 2 doctors. I asked HOW their general practice doctor was more qualified than my doctor who was known around the world and recommended by MAYO. The woman said that he thought I was in remission. I knew instantly that she had not read the last report. He started every visit with: “evaluate for possible remission.” Then, after going through the visit notes, concluded “NO evidence of remission and not expected.” I was then told I would not need to visit their drs and was approved. That was in 1995. I had also checked the “blue book” to see what was required. I knew that I had at least 5 conditions that could qualify a person for SSDI and I knew what had to be documented. I think many people list the condition and fail to describe how that condition manifests itself in their life.

  • Rhonda Worley-parsley

    I have a cousin who responds to people who say she does not look sick, “Well, you don’t look stupid either, but you are.” She has had over 30 surgeries including 5 back surgeries and knee replacement. She also has arthritis and COPD.

  • Rhonda Worley-parsley

    I hope you have a good pulminologist. My son had asthma so severely that he had 2-3 hour long attacks a day by age 8. Tests showed one third of his lungs were obstructed by the damage from asthma. I heard that he did not look sick by a school nurse and pe teacher. They shut up with the pulminologist sent a letter saying that his life was in jeopardy due to his attacks and that he should not engage in any aerobic activity at all. WE ultimately found that acid reflux was so severe that he was in active reflux 30% of the time and this was after the first major surgery for the condition (nissen fundoplication). He had a second surgery at 15. He missed about 6 weeks of school a year except the 4th grade year when I homeschooled him due to illness and half of his freshman and sophomore years due to major surgery. He will always have asthma and other conditions, but he graduated high school and has his first college degree and is now a respiratory therapist. Don’t give up. Good luck!

  • Rhonda Worley-parsley

    I went through that along with endometriosis, PCOS, fibroids, and adhesions around the uterus, fallopian tubes, and ovaries. I found that the very best type of doctors to treat me were reproductive endocrinologist. I had 5 recommendations for a hysterectomy by the time I was your age and had finally agreed; however, I got engaged and the surgeon saw my ring and refused to do the surgery. I did not know what to do. A friend who is a nurse and had a friend going through IVF got me in to see a new RE. She changed my life. I was able to go on and have 2 kids, but she believed me and worked with me. She referred me to an incredible OB for my care, but she was always involved. I wish you the best, but thought I might give you the suggestion of finding a RE. I worked with mine for years before I had kids and without her, that would never have happened. Once I had the 2nd, I had a hysterectomy and was very happy with the relief. Good luck.

  • Rhonda Worley-parsley

    I hope you are not suggesting that a person with asthma might not be disabled. All in my family have asthma, but one of my sons in particular has asthma. For years, he had 2 to 3 hour long attacks a day. A third of his lungs were obstructed by the damage from asthma by the time he was 9. His pulminologist ordered that he not be allowed to do ANY aerobic activity–no running, jumping, jogging, etc. As a kid, he could not even play a game in gym. He had to sit on the sidelines. He would have been a fabulous athlete, but he could not participate in any games. There were times that simply walking in the school door resulted in an attack. By the time he was 8, one of his doctors talked to him about death because he heard a news story about 5000 Americans who die from sudden asthma attacks each year. His doctor told him that his asthma was that serious and that was why he had to do every single thing we told him to do. He could not even be around freshly washed laundry because the tiny amount of lint in the air would cause an attack. I swear that I went for years with little to no sleep because I was terrified he would have an attack and I would not be there. Even as a teen, we had a bed for him in my bedroom because in a sudden attack, I could not get to him quickly enough. We had to have an epi pen with us at all times along with a portable nebulizer and other rescue meds. I had to watch him in ICU. I had to talk to doctors about how we had to turn the situation around…we just had to. By age 8, he was on adult doses of medications. I sat as foam would pour from his mouth during attacks. I had to look into his big brown eyes when, as a young child, he said, “Mommy, I know I could die from this.” Thousands upon thousands of dollars and specialist after specialist and surgery upon surgery later, he is better. He is now a young man and is a respiratory therapist in order to help others. I don’t know how long he will be able to work, but to suggest that people are on disability due to “Asthma” as to suggest that is just not a valid diagnosis is as insulting as you find others telling you or your partner that you look okay. I marvel at my son’s refusal to give up and how he cares for me because I am disabled. We both know that he must have a job that provides long term disability benefits because he has many other medical conditions–many that normally don’t hit kids his age.

  • Tania Wright

    I spent the last 2 1/2 years fighting for disability for my invisible illness and of course I was not considered “severe” I was only considered to be moderately disabled and because of that I got denied. I can only work as a server for 2 lunch shifts a week. that doesn’t even come close to making it on my own. I am so frustrated and blessed that I have someone to help me but just dumbfounded that they couldn’t see that my work had decreased and I was slowly getting worse as the years went by but because of my age and that I was able to work a little they considered my not “severe” I feel for those that deserve the disability and cannot obtain the assistance it brings from the government….A silent illness is much worse that a physically just on the bases that it’s harder to receive benefits and takes longer to prove…

  • Barbara Clowers

    Get a disability lawyer. You can find them that get a fixed fee that is taken from you first lump sum disability payment. an experience lawyer can make a huge difference in filling out the paperwork appropriately and filing the inevitable appeal. You may have to quit your job and live on unemployment first…and SSDI is never going to pay you as much as your job.

    I don’t look sick either and now I am 66 I can just pretend I am an inactive senior. I have two disabled daughters and I seem to be the least impaired.

  • Deanna Gibbons

    I was Hit & Ran over by a car in 94. Hit on my Left side Twirled me around and The car Ran Up my entire Body., Including my feet. it took 20 Years to get an MRI. After Numerous X Rays. Just 8 Herniated Disks, Scoliosis, Spinal Stenosis . Sciatica, And Probable MS. Went To a Neurologist & He had told Me That Marker that looked like MS In the MRI Was JUST ANOTHER HERNIATED DISK. So Just a year ago I had been diagnosed with RA. Had Good Pain Management .Great Pharmacy! Pharmacies plays an Important Role Now Days. They have more PULL Than Your Dr.s Apparently. Atleast In NV. And I Moved to Ohio. I was their for a Whole Year. Until I Finally goy into Pain management. He was so scared that He gave me less MEdicine & a Less of a dosage than what I started out with .! I couldn’t even get out of bed with that. Now were back Were As in My Family. Back In NV & Having to start ALL OVER AGAIN!!! Cant use My MRI THAT THAT THEY ALREADY HAVE. Cost me 400 bucks in Deductibles for a Referral to A NEW PAIN MANAGEMENT.AND X RAYS. IT IS ALL ABOUT THE MONEY! I AM WAITING ON MY NEW MANAGEMENT TO CALL & GO DO ANOTHER MRI. AND HOPEING & PRAYING THAT WILL TREAT ME WITH DIGNITY. AND NOT TREAT ME LIKE I AM A JUNKIE!SEEKING PAIN PILLS. I JUST GET SO TIRED OF BEING TREATED LIKE CRAP!!! AND GETTING INJECTION AFTER INJECTIONS THAT DONT HELP. SEEING PHYSICAL THERAPIST,CHIROPRACTORS. PRAYING FOR A DR.THAT KNOWS WHAT HE IS DOING!!! TIRED OF BEING TREATED LIKE THEIR IS NOTHING WRONG WITH ME!!! I FEEL LIKE I HAVE BEEN SPEAKING IN A FOREIGN LANGUAGE THAT NOBODY UNDERSTANDS.!! THAT IS ALL I HAVE TO SAY FOR NOW. THANKS FOR BEING HERE.SO I CAN VENT. UNLESS YOU HAVE PAIN, NO ONE CAN UNDERSTAND WHAT YOU ARE GOING THRU.

  • http://batman-news.com Thomas

    I am a physically disabled man, a former athlete that at 40 started on a road of disintegration of the body, with extensive bilateral joint hip replacement and two femoral posts [same time], degenerative arthritis, a sensory and motor neuropathy that is so painful I am tempted to cut my legs off below the knees. I also need extensive lower back surgery, and have a hereditary liver disease called Hemochromatosis.
    I qualified for disability on the first try, without an attorney. I can now barely walk at times, but I am content with my life. Our family barely holds on financially. I am a college grad from a major university and was on the way up in my career. Things happen for sure.
    I feel your pain, and live with someone close to me that suffers with similar stuff. She works all day, comes home at night and sleeps. She sleeps on weekends. We could, but have not been intimate in years.
    The facts speak for themselves, but I was an athlete, and doctors and friends would say “Well, you look okay to me?” Great! It causes one in chronic pain to isolate themselves, because friends, though they may love you, are ignorant of what you Stephanie are going through.
    I have met some people on disability that are fine. They are on it due to “Stress” or “Asthma.” There are so many on disability that shouldn’t be it’s not even funny.
    Find a doctor that is sympathetic and empathetic to your illnesses. Right now you are a walking disabled person that should be off work an extended period of time to treat yourself to a better life than you have.
    I have tremendous compassion for you, and pray you will stay the course.