When You’re Not Sick Enough

 

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

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

Simple.

I’m not sick enough.

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

Thus befalls the curse of the invisible illness.

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

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

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

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

Because I don’t look sick.

 

Article written by Senior Editor, Stephanie Kennedy.

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

©2024butyoudontlooksick.com
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  • waylaid

    Oh God yes. My chronic back pain: 11 years; can’t work; can’t stand or walk for >10 min; mostly housebound; includes neuropathic pain, sciatica, paralysed infraspinatus muscle, numbness and pins and needles in L foot & sections of calf and thigh, no feeling in 3 toes, and muscle spasms in L lower back, buttock, hip and thigh which are 6-9.5/10 pain, limit mobility a lot – completely, last minutes – 9 days, and can happen 1-5 times a week. I have muscle wasting in L lower back, buttock and thigh; subtly uneven gait; hypertrophied muscles in L side of middle back, so some visible signs, but only if you look for them. Tramadol, codeine, morphine, various anti-depressants for pain, gabapentin, used to take naproxen and paracetamol but they wrecked my stomach and liver. Been at pain clinic twice for over a year each time. Physio, osteo, massage, hydrotherapy, spinal injections, radiofrequency ablation of nerves, facet joint injections, then pain management programme for over a year.

    Miraculously “cured” multiple times by welfare assessors. Had to go to court to get money back, multiple times. Won every time. Disbelieved by various medical people, my Dad, friends, etc. Accused of pretending to have back pain to feed my supposed addiction to opioids by group therapist. !!! Never had ANY addiction probs, stable dose, stable prescribing, etc.

    I could work, I suspect, if I could find a part-time job, low-stress, entirely on computer from home (in bed), flexible hour. Alas, few and far between. I’m treated as if I’m a lost cause, which means that I can’t prove my worth. :/

    It’s driving me INSANE.

  • L. Kerr

    Hi Erin, just wanted to say, I have that constant headache. 24/7. All the time. Every. Single. Day. Endlessly. I get it.
    Really hoping you’ve found some relief along the way.
    Best, Linda

  • Ann Cohen

    This so sounds like my life right now. I was diagnosed with Hashimoto’s in 2013 and just recently got confirmation that RA has started to kick in. I have been working overtime for the past 3 years. The last 14 months has been to keep my husband and I afloat until his Clearance comes through and companies will hire him again. I have tried to get the “Disabled Pass” twice for mass transit here and the second time was accused of fraud for filling out my Doctor’s contact information (name, address, phone, fax, etc.). I have given up on that route, but regular mass transit is a royal pain in the ass.

  • Janice Tollis

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  • waylaid

    Yeah, my GP believes me, because he’s been my GP from the beginning, and because I’ve never taken more Ultram than I’m taking now, and I only ask for benzos and oral morphine every 12 months. I’m very careful, because the last thing I need is an addiction to go along with my current problems! And yet… People are constantly saying, “You could be addicted. Why don’t you go off them?” I’m not. I didn’t take them for a couple of days a few weeks ago because I had a couple of really good days. I was fine. “It’s almost certainly trauma and stress – you shouldn’t be taking opioids for those!” Yeah, yeah. The spinal surgery, spinal injections, denervation, etc., say you’re wrong. “Have you tried mustard powder? I saw it on the internet! Then you could stop taking those awful opioids!” Mustard powder is a crock of sh*t, but yes, I tried it anyway. It didn’t work. And yes, opioids are awful, but I couldn’t live without them. The pain and limitation of my mobility would be even worse, and I just don’t want to live like that. “You can’t take opioids for the rest of your life!” No? Why not? “Are you a drug addict?” Seriously?

    Grumble grumble grumble…

  • waylaid

    Yeah, my partner of 6.5 years left me because he “didn’t want to be limited by my disability”. Gee. Thanks.

  • waylaid

    I’m so glad that we have the NHS here (for now, at least). I’d be screwed if I were in the US.

  • waylaid

    I think they know that we’re sick/disabled. They just don’t care. After all, it’s not like we’d vote for them, is it?

  • waylaid

    My Dad decided that i was lazy and enjoying not working and living off of the government. Seriously? I’ve never been lazy – my life was one long list of accomplishments before (except when my depression kicked in).I wish I could work, even doing something incredibly boring for a crap company and with a newt for a boss. I can’t, though. And seriously, does he think I’d give up the career I worked so hard at, which I loved, and which paid me 55k, in order to live on less than 12k a year? Yeah Dad, that makes total sense.

    He became abusive, and eventually I had to cut him out of my life. Now that my stepmother has come down with the same two conditions as me (what are the chances?!), he suddenly understands and wants me back in his life. Oh, I see. I let him back in, but not far. The fact that he could believe that I’d fake being so sick, and then treated me as if I were lower than dirt, destroyed our relationship. We can Skype a few times a year, and exchange a few emails, but that’s all he gets.

  • waylaid

    The UK Disability system (PIP and ESA are the benefits for people with disabilities and/or chronic illnesses) is so slanted against claimants that it ain’t funny. I’ve had chronic back pain for a decade, with paralysed muscles, a permanent spasm in my lower back, neuropathic pain, sciatica, contracture of one leg, and acute muscle spasms. Everything but the paralysed muscles gets worse when I stand, sit, walk, bend, etc. I take a lot of meds. I also have long-term mental health problems (worse since I became disabled, lost my job, career, financial stability, place studying, and relationship). I take a lot of meds for that, too, and receive various treatments. Yet, after years of receiving both benefits, I was reassessed in October and got nothing. I’m cured! It’s a miracle! *jumps up and down with excitement* Ow. OW! Oh. Damn.

    Apparently I was well-dressed (jeans and a sweatshirt), had showered that morning (after much prodding by two friends), didn’t look tired (2 hrs sleep in the 48 hours before the assessment), looked well-nourished (I’d lost 3.5 kilos due to depression – I don’t eat), and showed no signs of pain or anxiety (I was on so many meds that I barely remember the assessment, and I was sweating, shaking, and caught myself rocking back and forth several times). Huh. The assessor ignored my medical evidence, and didn’t believe anything I said, because I’m used to hiding my problems, and he was the most unobservant person EVER. I guess I’ll go get a job. Wait, nobody would hire me. Huh. OK then, I’ll go to court, damnit, and fight for my benefits. Grrr.

  • Wendy Jone

    Hey Courtney, thanks for responding. I actually see a chiropractor (for years now) who keeps an eye on the atlas situation. I had really high hopes when he said it was off, but adjustments made no difference. 🙁

  • Courtney

    Hi, I’m obviously not a medical professional, but have you guys considered a subluxated atlas? because that’s exactly what it sounds like, and as far as I’m aware it’s treatable (though it’s an easily overlooked diagnosis)

  • Carrie-Anne

    I was diagnosed with Multiple Sclerosis (MS) in October 2011, at the age of 44. I woke up one morning with numbness in my lower back and legs, I couldn’t feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to NewLife Herbal Clinic natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit NewLife Herbal Clinic official website ww w. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com.

    This treatment totally reversed my condition! I am strong again!

  • Wendy Jone

    Hey Erin. I sure get what you mean about losing words easily. I’m fine writing, but verbal is sometimes a real challenge. I also have trouble understanding if people talk too fast.

    I’m glad you got a diagnosis! I had to look up chronic vistibulopathy–that was one I haven’t heard of. Mine doesn’t seem to be dependent on head movement–and I went to Mayo Cinic and got the vestibular system checked out in 2009. I’m assuming they would have found such an issue. They labeled mine Chronic Subjective Dizziness–another term, I later found, for Somatic Disorder. Lots of brain retraining (and useless meds–antidepressants, of course), but no improvement over the years.

    I hope it eases for you over time, and I am thrilled to hear that you’ve found a good provider. I’ve just learned–for better or for worse–to live with my symptoms. It’s funny with the 24/7 thing and how people just seem not to get it: “You get headaches?” Me: “No, a headache. Singular. It’s 24/7.” Them: “Oh.” Pause. “So how long does it last?”

    It really amazes–and saddens–me how many people are posting on various forums with various symptoms and stages of desperation, with long stories of long years of looking for help, or at least, COMPASSION, from various health professionals, and finding so little relief, and reeling from the cost and complications of trying to find help. I hope that someday in the future, technology can, if not always find a cure, at least shorten the search for compassionate medical providers who are willing to dig for answers rather than dismiss complex symptoms as psychosomatic.

    Good luck, Erin, and everyone.

  • Erin Levinson

    Hi, it sounds like we have some symptoms in common. I woke up one morning not feeling well, with a headache which accumulated to acute vertigo, tinnitus, hearing issues, etc. The thing that stands out is the headache 24/7. Every.Single.Day. I have never come across any one else who has one also.The vertigo has settled into something much like what you describe as standing on a dock. Cognitive impairment as well, some kind of brain fog where I loose my words easily. After many months I saw a vertigo and headache specialist (this dude is my new best friend), and got a real diagnosis- chronic vestibulopathy. The cognative stuff is part of it! I thought I was going nuts. For me it is related to my ear, but it can also come from two other brain related places (forgive me for not remembering the names off hand). This pain is far from minor. Due to the vertigo/headache similarity I thought I would mention it, in case it resonates with you.

  • SHIRLEYHECHE

    I was diagnosed of Chronic Obstructive Pulmonary Disease (COPD) in summer of 2014, my symptoms started out with shortness of breath and chronic cough. The pulmonary disease specialist prescribed me some medications to help my symptoms however the medications did no good and their side effects were too severe. In May 2016, i started on NewLife Herbal Clinic COPD Herrbal formula treatment, i read alot of positive reviews on their success rate with the COPD Herbal formula and i immediately started on the treatment. Just 11 weeks into the Herbal formula treatment I had great improvements with my breathing, there is no case of dyspnea and chest tightness since treatment, visit NewLife Herbal Clinic official website www. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com. This treatment is incredible!

    Shirley Heche

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