Di Has Stories…

(and they’re all true)

Me? Disabled?? October 12, 2006

Filed under: being a sickie — Diana @ 11:46 am

Having been out with my HAE twice last week (for the first time ever, as I recall), and seeing not much end in sight, I have decided that it is time for me to apply for protection under the Family Medical Leave Act (FMLA).  Even thinking about having to engage in this process has left me feeling a little…I don’t know….uneasy about the state of work in this country.

Here’s my situation:  I have a chronic, unmanageable condition.  For the most part, I can work around it – I can work even when I am symptomatic, and let my personal life take the brunt of the illness.  When I am flaring, I am tired and cranky, and don’t have the energy to do much beyond the 8 hours I have to put into my job.  I hate having to compromise the part of my life that matters to me (home) for the part of my life that I can take or leave….except for the money.  No money = no home = no fun for Di.

But there are times when I am flaring that I cannot work:  my eyes are swollen shut, my tongue is four times its normal size, or my throat is shutting.  Those days, I stay home, and in bed for most of the time, trying to sleep the pain and discomfort away.  My body fighting itself like that wears me out for a few days, but I have never missed two days in a row for an episode…I drag my sorry, tired ass to work. 

I’m lucky, in terms of HAE.  My flares are much less often than some people, and I really only end up missing about 12 days of work per year for a flare.  That’s an average – some years it’s more, and some it’s much less. 

Here’s the hard part:  12 days per year puts me over my paid time off (PTO) limit.  I only get 15 days per year (and in this country, I’m lucky to get that!).  That means that I don’t get to take a day off….for any other illness, for moving, for getting married….my PTO is always tapped out.  And when you start taking unpaid time off, you start running into “disciplinary issues” at work.  Oh, and you get to the point where you can’t pay your bills, cause you’re not making that much money even when you are getting paid all the time.  And you’ve racked up lots of hospital and doctor’s bills, which under your insurance are not covered in a way that fits with your budget. 

The Family Medical Leave Act was passed to give people who have a serious health condition job protection when they are unable to work.  You get up to 12 weeks of this protection per year.  You don’t get paid for the time, but you get to keep your health benefits, and when you are well you get to return to the same or substantially similar job that you have before. 

Although the actual legislation does not specify this, most companies (including mine) have interpreted the law to mean that this leave can be taken intermittently – that is, in a situation like mine, I can call in sick day by day for up to 60 days per year before my job is no longer protected. 

I’ve never been sick enough to use that kind of time…unless I decided not to work every single time that I swell up (which would mean that I would be at home more than I am at work, as the swelling has been fairly constant for the last few months).  That is more than enough time for me to give myself the care I need.

HOWEVER, what get my goat is that I have to go through this process.  I am not that sick. 12 days on average per year, is one day a month.  I don’t have a high volume job – I’m usually caught up from a day off within a couple of hours.  However, I do have a job that requires that my ass and I are at my desk for the entire time I am working.  There is no work at home option.  There is no flex time.  I’m either there….or I am using my PTO.  Which is never, ever enough.

So, I’m stuck in this weird limbo.  I’m not sick enough that I feel I should have full disability, because for the most part, I can work.  However, I don’t have enough flexibility to take care of myself, and therefore I and my family end up suffering financially, and emotionally.  It’s hard to work when you are exhausted from fighting a flare.  It’s hard to work when your fingers are the size of sausages, and your feet itch you to distraction.  It’s hard to work when you are so uncomfortable that you can barely focus on what your customer is saying.  And it’s hard to be at work when you know that you have to be there, or the bills don’t get paid.  Including the bill that you racked up just last week for the hospital stay (for which you are not getting paid, because you used your last day of PTO four days before when your eyes swelled shut).

But it’s tempting to think about disability.  It’s nice to think about a time when you aren’t feeling stressed out and causing your body to go into flare mode.  It would be nice to be able to do the things you love to do without worrying that you aren’t going to have enough energy for work the next day…or not be able to do them because you are too worn out from making it through that day.  I think that technically I could qualify for disability, but to do so would make me feel dishonest, and like I am using the system.  And that’s not the way I like to operate.

Even applying for FMLA seems like a cop-out to me.  Why should I have to go through a process that is fairly degrading, and let a bunch of people that I work with see my medical records, and give them final authority as to whether or not I get to keep my job?  After all, they can determine that my health condition isn’t “serious” enough, and then fire me in a few months when I’ve taken too much unpaid time off.  (Yes, it’s a corporate crime to take too much unpaid time off…no matter how good of a job you do, or how caught up you always are.)

Today Jeff was driving me to work, and I saw two people walking down the street in downtown Minneapolis with their white canes.  I told him that I think it takes real guts to do that – to walk in a busy city during morning rush hour with limited (if any) vision.  I told him about the story my friend Julie told me about her cousin – he is taking this semester off college because he had a brain tumor.  It was benign, but he has lost vision.  He can only see peripherally out of one eye, and has lost the peripheral vision out of the other eye.  He returns to medical school next semester.  He is going to be a doctor, with this limitation.  That, my friends, is courage. 

There are lots of people that manage to hold down jobs with limitations that frighten me to think about.  There are a lot of people who probably deserve to have a nice disability check once a month, and yet they go out and find a job and are contributing members of society.  They have issues, but they work around them, and they are a good enough human being to take that as a part of life. 

I would like to think that I am one of those people.  I don’t like my job, but I show up every day and do it to the best of my ability.  I exceed my performance requirements, and am a highly rated member of my team.  It angers me that my “disability” is just large enough that I always have to worry about my job stability, and that I can be categorized as a “bad employee” just because I need a few more days a year than everyone else.  Due to a health condition that, all things considered, is far better than it could be, I need to ask for “protection” and “special benefits” for the privilege of keeping my crappy job. 

There is something wrong with a system that discriminates against people who are otherwise good workers.  For the first time in my life, I am about to file for FMLA protection, and I feel like I am bastardizing the spirit of that legislation.  I feel as if I need to beg for mercy from my employers for a condition that I have no control over…for which there is no treatment…and with which I am still a great employee. 

Thinking about the battle that I am about to fight, and the battles that I will continue to fight until I retire or there is a treatment available exhausts me.  Thinking about how few rights I have as a person that depends on a paycheck saddens me.  And for the first time in my life, I can understand why some people choose to take the easy way out, and quietly take a disability or welfare check, and fade away.


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