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.

©2016butyoudontlooksick.com
  • Crz

    I can’t even think of applying for disability. Going on three years and I still don’t have a diagnosis! I don’t even know how to talk about my condition. I’m told it’s not a disease. It’s like I have a chronic case of That Which Must Not Be Named. I’m pretty sure disability pay doesn’t cover unnamed nondiseases.

  • Molang Cook

    stop tanning and wear frumpy clothes to the doctor, who cares what people think.

  • Renee Barsh

    I have also been denied because of my age and education level. Though I feel excruciating pain everyday most of my medical issues are unseen. I now have to go through a hearing God knows when for a judge to look down his nose at me. I suffer from PTSD, agoraphobia, epilepsy, anxiety, panic attacks, fibromyalgia, and lupus but because I don’t look the part and because I have a good education I’ve been denied twice now. My lawyer has high hopes for the hearing but me, not so much because it would mean leaving the safety of my home to go there and as an agoraphobic even though I haven’t gotten a date yet I am constantly panicking over the whole situation. Due to the epilepsy I can no longer drive and there is absolutely no way I could possibly take public transportation, that’s just a seizure waiting to happen. Even family members look at me funny when they hear that my doctors have stated that I’m disabled and that it’s not safe for me to work. Just this week my daughter told me about a friend of hers that is half my age and she was approved for benefits because she has ADHD, all I can think about is how is that fair, one medication can help her when I’m a walking pharmacy, not to make light of her disability but come on. I don’t think it’s right that they can pick and choose who is sick enough, if a doctor deemed you disabled then that should be all they need.

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  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.
    Thomas

  • Patricia

    Hi all, My name is Patty. I worked hard all of my life and participated in many sports. I would love to work again and be active in life. But have suffered multiple illnesses and pain over the last 4 years. I too have been denied disability. I am definitely NOT happy that you all have gone through this as well, but feels better to know I’m not alone. I’ve had one diagnosis after another and have felt well for short times in between. I had a dr.tell me, and the disability judge, that I just wanted pain meds because I would end up in the ER in severe pain when he would do nothing for me. I feel so desperate. I’m going to lose my house soon and I’m just so hopeless. I don’t know what to do anymore. My disability is being appealed but that could take months and could be denied again. The judge said one reason I was denied is because I could take care of myself, but it would take 2 or 3 hours to just wash and brush teeth etc. Is there something we can all do together? I know it’s hard as we all are suffering but somethings got to be done. I wish you all well.

  • Renee Barsh

    If I could ask what caused your PTSD and how does it affect you. Mine has turned me into an agoraphobic and I’m terrified of men I don’t know. It’s so hard to deal with because I was once such a people person, I worked in the medical field but now I can’t even be around more than a couple people at a time and I only leave my home to go to the doctors or if there is an emergency with one of my children. I love my house but it also feels like my prison because of what someone else did to me. Any thoughts or suggestions on how I can try to overcome this?

  • beth

    Stephanie,
    I just re-read your post and I know from experience what you’re going through. I’ve been sick for the last 12 years. In the past 3 years I’ve been hospitalized in the ICU 5 times. In addition to the lung problem that keeps landing me in the hospital, I also have fibromyalgia, dysautonomia, PTSD, depression and chronic fatigue syndrome. I’ve been begging my doctors for years to declare me disabled with out any luck. I can’t blame them in a way. Firstly they are likely thinking that it would be impossible for one person to have this many issues and secondly…they’re healthy folks. They’ve never suffered from chronic, debilitating pain and fatigue. They have 100 spoons when they start their day. They cant imagine having any of our chronic issues. What it feels like to wake up tired with pain throbbing throughout your whole body- pain so bad that you’re positive your hair hurts. Your skin is tender to touch, you have a migraine and are nauseous…. They cannot possibly understand what it feels like to wake up this way with multiple, debilitating issues.

    Any way. I am hoping to give you some hope. All of the sudden 2 of my doctors are willing to sign me out of work for long term disability. Its gonna be tough on the budget and I feel a little guilt about not working- but I’m doin it! I’m scared and nervous about this new chapter in my life but I know work is killing me. So I’m doin it!

    I will send good thoughts your way and hope that one of your doctors will go to bat for you. I know you’re suffering and I am so sorry for that. Try to keep hanging on and just do the best you can.

  • Patricia

    This is just awful! I’m so sorry for you and everyone whos suffering terribly and can’t get the help we need and deserve. I know someone who has disability for just carpal tunnel and seems like so many of us who posted on here have alot of really serious and multiple illnesses. I’m not saying he shouldn’t get his disability but so many of us should as well.

  • Kelly Leone

    I am a 40 yr old with a proven and backed-up diagnosis of a liver disease i was BORN with! with this disease is a snowball effect of 7 other physical but internal ailments in me, including portal hypertention, gastritis, enlarged spleen and only 1/2 a pancreas. because of all of this, i don’t eat or sleep well, i can’t regulate my own body temperature, i have a lowered immune system and a hard time absorbing certain vitamins. and social stress causes me to bleed from one of my inflamed vericose veins branching from my portal vein… sending me to the ER and having to be in the hospital for at least a week, with a home recovery time of another week… i have been denied disability 6 times in the last year alone, and cannot keep up with my hospital bills. when will the government/ social security people realize that there are people out there in desperate need of help??

  • Christian matea

    Thank you for sharing. I felt so alone in my SocialSecurity denial. I have 4 medically proven diagnosis. Everyday I either roll out of bed, have my husband help me out of bed or sleep sitting up on the couch (if I sleep at all) because the pain is too much. I sit to brush my teeth, sit to get dressed if I’m able or just don’t bother some days. Their reason to denial: I can walk by myself and although it may cause pain, they say I can still sit and do work (even though my records say it is painful for me to sit, stand or lay down any length of time). So the job search begins because I can’t afford to be sick. I have had so many procedures done to get rid of the pain, I’ve lost count. That makes no difference to them. I can walk and I can sit, so I can work. Pain means nothing to them. It’s a shame since I know someone who has ADD and she qualified within a month. Some thing needs to change. In the meantime, I’ll continue to walk hunched over, with a limp and exhaust myself with work at the office and at home. Again thank you so much for sharing!

  • Beth

    Stephanie,
    I feel your pain. I too have about 5 diagnoses and cannot get a doctor to say I’m disabled. I am working only 32 hours per week and have the same routine you describe. I come home and fall into bed. My weekends are spent in pajamas on the couch and I’m not fully able to clean my house, cook, etc. I used to work the hours you describe but I just can’t do it anymore. I don’t have the energy to do any of the things I used to enjoy. I hardly even remember what joy is. I’m sick and tired of being sick and tired. Not only do I have to convince friends and family that I’m really sick I have to convince my doctors too. I’ve been to atleast two dozen doctors with no luck. There’s ten years worth of documentation! My symptoms are worsening, not improving. I run myself ragged (even at 32 hours per week) until I’m in the hospital (5 times- twice for respiratory failure and had to be on a ventilator). But no. I’m not sick enough. Don’t even get me going on medical a bills! I can relate to that too. It’s beyond frustrating.

    Thank you for sharing your thoughts. It meant a lot that you shared your pain. Letting others know they aren’t alone. That’s worth a great deal to the rest of us in similar shoes. I know this is not the life you want to live. It’s not the life I want to live. Always feeling ill. Feeling a weird kind of exhaustion that goes beyond just fatigue. Exhaustion that’s in your bones. Like even your cells are tired and miserable. I am proud of you for getting up and going to work every day. I also understand that it sucks what small amount of energy you may have and leaves nothing for the things you want to do. I wish you luck on your disability journey and am sending good thoughts your way. Please try to take care of yourself.

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    problem, I would be of help to such person by referring him or her to the only real and powerful spell caster who helped me with my own marriage problems and who is different from all the other ones out there. Anybody could need the help of the spell caster, his email and his cell phone contact. [email protected] +2348101571054 you can email him if you need his assistance in your relationship or any other problem.