Behind the Mask

      Every day, we all wear masks.  All of us, for all situations.  We wear masks at work to appear professional, we wear masks around our families to maintain a certain connection, a certain level of peace, we wear masks when we go out in public, to either fit in with a crowd or to stand out, we wear them around our friends to show them (or hide certain parts of us) who we really are.  For most of us, it's not a conscious act.  It's just something we do.  For many chronically sick people, we wear masks of bravery and cheer so that we don't worry anyone or come across as whiners, crybabies, invalids, or make anyone treat us differently or feel pity for us.
     Part of the reason is also because of the ignorant stereotypes.  We don't look sick.  There's not much research out there and what little there is, for some invisible illnesses there are commercials and advertisements for pharmaceuticals that make it sound like if we have one of those diseases, all we have to do is pop one of those magic pills, get a few of those injections, and we'll be back on our feet and good as new in no time.  Except that's not reality--that's just Big Pharma's way of making a profit and further spreading ignorant stereotypes.  Should those magic medications not work (or should we have a diagnosis, there HAS to be a treatment to make us better because that's what doctors do after all, right?) we're just whiny, self pitying, lazy slackers.  So we need to just get up, dust our lazy arses off, and get back out there with a positive attitude!  And that's that! (I'll leave out the slew of foul language that is my opinion to THAT one...)
     The truth is, it's not that simple.  Most of the time, getting a diagnosis isn't even that simple.  Hell, finding reliable information online isn't even really that simple.  And as sarcastic, funny (at least I like to think I am), and brave as I may act most of the time, the truth is, I'm scared as hell. 
    It's hard to explain to someone that I'm sick.  Not only am I sick, but those who have known me for years have a hard time believing that I can still be sick for so many years and have seen so many doctors and none of them can tell me what is wrong.  I look normal.  I gained over 100lbs, I lost almost 150lbs.  I put back over 110lbs, and in the past 4 months, I've lost 30lbs and still losing.  Long before my symptoms get to this point, my rheumatologist puts me on high doses of steroids for 10-20 days and except for the muscle aches, I feel better for a few months with exception to the 20-30lb weight gain and being a hyper raging bitch the entire time I'm on the steroids.  But the symptoms inevitably return.  And they always return worse than the previous time.  And I never get answers, just more steroids.  Now it's on to new doctors, new tests, and God willing, finally a diagnosis.  Not an educated guess, not a bunch of pills shoved down my throat to see if it works and a "if they work, we'll leave it at that, there's no reason to mess with it" attitude, but a real, actual, black and white diagnosis.  I don't even care what it is.  As long as I can FINALLY put a name to it.  Because then I can at least be put on a path towards a treatment/management regimen, even if it's only to improve this hell I'm living just a little bit.  It will have a name and it will be real.  Right now, I'm on medication to control 3 forms of migraine headaches and a regular dosing schedule of a powerful pain medication until I'm diagnosed. I sit here at the end of every single day and realize that this disease has taken another day away from my life.  It's not because I'm lazy, it's not because I've given up, it's not because I'm not trying to live.  It's because I'm in that much pain, because my joints are that swollen (my hands are starting to become that gnarled), that I physically can't do everything I want.  I get up, I make sure I stretch, I do little things here and there, but I'm not living.  Because something is destroying my body from the inside out.  And that something is something other people can't see.  They can't see it, they can't feel it, they can't hear it... all they see is me.  And to them, I look normal.  Just lazy.   They know people who have kidney failure and are on dialysis, who have had strokes, who have Alzheimers, who are in wheelchairs from accidents or diseases, have cancer. Some of those people I described above barely get around during the day, but no one dares call them lazy because they're sick, so that's acceptable.  Because I'm undiagnosed, because even when I do get diagnosed, I'm young, it'll probably be some rare autoimmune disorder (which seems to be the general consensus right now, it's a matter of figuring out which one), because Big Pharma has commercials with magic pills showing people with autoimmune diseases using that crap and celebrities coming out of the closet saying "hey!  I have this!  let's raise awareness!" and going about their daily lives as if nothing's amiss, I'll most likely still face the same challenges as before.
     Even scarier?  I'm only 32.  I can't have children.  And even if I could, I don't know if I would because of the possibility of passing this hell down to my children.  I'm also living at home in my parent's basement.  I stayed here to help out my brother before my mom got sick.  Then I stayed here to help my mom.  While she still needs my help (not nearly as much as she did), I need hers.  I watch my friends and my family getting married and starting families of their own and while I know I'm doing the right thing now by focusing on my health, that tiny little voice in the back of my mind can't help but ask will I always be stuck in this basement?  I'm 32, I'm sick, I'm broke, and I live in my parents basement.  And what happens when I do get diagnosed?  How will that affect my life or my life's plans?  While it's easier to hide behind a mask and pretend to not be afraid, nothing is scarier than the unknown, wearing a mask or not.