Rights and Reasons

    In many ways, I owe this post to a recent friend, Chris.  She made a comment on my last blog that, like most of us with chronic illnesses, I deserve the right to be as healthy as I can and she hopes I get there.  It's not uncommon for others to post comments on the sites I post my blogs on instead of this site instead of posting comments directly on here, but when I do get a comment on here, I receive an email notification letting me know who commented and what the comment was.  Of course it was first thing in the morning and my caffeine deprived brain misread the comment as "you deserve the right to be healthy."  It got me thinking.  Last night I shared a post of a brave young girl's page whose intention is to spread awareness of juvenile arthritis and myositis as well as other autoimmune disorders.  She may not have many followers yet, but her message "always positive" is also spread along with hundreds of other young children who share the same disease she's fighting.  Her mother thanked me for sharing her page, in the hopes of getting more people to like the page and spread awareness of these horrible, painful, often invisible diseases.  There wasn't anything to thank, if I was her age, I would hope someone would do the same for me if I was that brave as to share my story and try to spread awareness. 
         What it really comes down to is this:  no, we don't all have the right to be healthy.  What we do have the right to, however, is to be happy.  Being happy is a choice we have to make, no matter what life's circumstances bring us.  Another reality is that everything happens for a reason.  Since letting go of (most) of my anger of becoming sick and reaching out for support and knowledge from others about what I'm going through, I've noticed a common thread among those I seem to have bonded with:  we're very loud and outspoken.  We also tend to have a pretty sick, twisted, demented sense of humor.  But we all have a few common goals in common:  we want to spread awareness of these illnesses to dispel ignorance, prejudices, and stereotypes that come along with invisible illnesses.  Whether it's fibromyalgia, chronic fatigue syndrome (any illness that is not autoimmune related, hard to scientifically diagnose with a specific set of labs, but rather the exclusion of labs) or any of the hundreds of autoimmune disorders, on the outside, we all look relatively healthy.  Some diseases cause us to become seriously overweight (either from the disease itself or from the medication treatments), while others cause us to become under weight.  Sometimes our joints may look just the slightest bit "off" if you've known the person for years and you notice the change, but what you don't see is the pain that they're in. 
       We don't work because we're lazy, because it's easier to collect government money and benefits or because it's just easier to let our families support us while we lie in bed crying why me, poor me, I'm such a loser, etc.  Most of us don't work because we CAN'T.  It's not a choice we have.  That choice has been taken away from us.  Employers tend to hire people who show up when scheduled and schedule employees who can work when needed.  They generally frown upon the "I'm not sure if I can work next Wednesday... the forecast is calling for rain and a 25 degree drop in temperature and usually that causes my body to react pretty violently..."   Some of us CAN work.  Some even full time.  Some are lucky enough to have a diagnosis, the right combination of treatments, and the right job that allows them to work full time with little interference.  Some have to collect disability but can only handle working about 20 hours a week.  So to generalize someone with a disease based on a few you've heard of is wrong.  Having said that, here's myth #2:  just because someone has a diagnosis means a doctor can either cure them or give them a treatment regimen to get them healthy enough to work.  No.  A diagnosis is a starting point.  Sometimes the best thing a doctor can do with a diagnosis is to simply make that person comfortable until science catches up.  I can go on and on about all the myths, prejudices and stereotypes that ignorant healthy people come up with because it's easier than learning the truth (and let's face it, who wants to look up this stuff when you can watch porn, read up on the latest celeb gossip, or funny YouTube videos, right?)
        But some of us live with this every day.  And while sometimes it sounds like whining, it sounds like a pity party, a cry for attention, it sounds like a temper tantrum (although sometimes it is, especially when it comes to dealing with the medical field), there's a much bigger picture here:  it's about raising awareness.  It's about raising awareness of these invisible diseases, these incurable, but somewhat treatable diseases, these painful diseases.  It's about raising awareness that no one is immune to them--young old, short, tall, black, white, purple, blue.  And it's about raising awareness about what it's like to live with them.  As of right now?  I've been misdiagnosed, and under diagnosed.  And even when I finally get my diagnosis (whether it takes weeks or years), if I'm ever able to return to work, no matter what happens, I know this--I will never stop my mission to educate the ignorant.  I got sick for a reason.  I'm loud, I'm outspoken, yes, my mouth tends to get me in trouble, but it can do some good-- to draw attention to something that doesn't receive enough of it.  And I know I'm not alone in it.