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.

©2017butyoudontlooksick.com
  • 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.

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