Living with Lupus: Dealing with Morons

               This past semester has been a struggle.  I have been judged by my peers in multiple different ways and multiple situations.  Many times I've considered giving up, leaving, and essentially hiding from everyone that causes me pain and turmoil.  Did I? No.  Was it easy? No.  Why didn't I just quit? Because the opinions of morons and potential limitations I face won’t ever hold sway over my life and how I choose to live it.

               The first notable situation I can recall was at a church choir rehearsal.  I asked for prayers for my health as I was becoming very ill from fibromyalgia and lupus.  After the practice, I was approached by several women who, despite their kind intentions, made scarring remarks.  They told me “You’re too young for lupus,” “Are you SURE it’s lupus,” and my personal favorite: “I know a lady with lupus!!! She died… and it was horribly painful for her and nasty for us to watch!”  HOW DO YOU RESPOND TO THAT?!?!?!  What I wanted to do was tell them that no, I’m not too young, my SPECIALIST is darn sure I have lupus, and that comments like those are why people become Baptist.  What I did say was “Thanks for your prayers” and just walked away. Benjamin Franklin said that “It is ill-manners to silence a fool and cruelty to let him go on.”  There may be no perfect solution to handling a situation like that.

               The second situation that stands out in my mind was when I was in class with a professor. As stated in a previous post, I had a Non-Epileptic Seizure (NES) in that professor’s class.  Approximately a week after the test, I went to him and asked to retake it or have extra credit and was told “No!!! It wouldn’t be fair to the other students.”  After hearing that, I asked “Why?”  He walked away very quickly so I couldn’t keep up with him.  Later that month, that same professor told me that I should drop out of school because I was intentionally killing myself by being in school.  He tried to convince me that it was MY fault that I’m sick and that I was basically committing suicide by being in school… and as such it was my fault that my grades were so low.  What I wanted to do was cry and blow my lid and report him.   What I did was choose to forgive and say “Thank you for your advice sir” and walk away.  Hermant Smarty wrote that “forgiveness doesn’t excuse their behavior.  Forgiveness prevents their behavior from destroying your heart.”  I was traumatized by his treatment of me and it cost me months of health, panic attacks, minor stress-induced seizures, and caused my illness to progress irreparably.  The healing began when I realized that dwelling on stupidity is not worthy of me risking my health and happiness.

               Last but not least, the third situation happened just before my last final in the course taught by the aforementioned professor.  I took that final through testing services by the direction of Disability Services.  As I was sitting in the waiting room with several other disabled students, one turned to me and asked me what was wrong with me.  After that, all of the other students there turned to me with the same question.  They told me that I looked “too normal” and that I didn'tbelong there with them.  They pressed hard and kept asking until I blurted out a random answer.  Some there may not have meant to be cruel… but the remarks from some present hurt.  You see, their disabilities were more visible than mine.  They didn't understand that invisible illnesses can be just as invasive but in a different manner than more visibly noticeable illnesses.  Do I blame them for their questioning? Not really, it’s a common misconception.  Does it still hurt to hear that?  Oh definitely.  Martin Luther King Jr. once said “Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will.”  Invisible illnesses can be alienated and occasionally mocked by people with more obvious problems.  I am blessed to not be marked physically, but it does not lessen the trauma or pain that ensues.

               In summary, people don’t understand what you’re going through and some absolutely don’t care.  The important thing to remember is that it doesn't matter what they think because people like that are wrong.  My family has a saying that “it’s a waste of time to argue with an idiot.  In their mind they’re always right.”  It’s a horrible translation of a segment of Bacchae by Euripides: “Talk sense to a fool, and he calls you foolish” but still accurate.

To those who have family/friends dealing with an invisible disability:

               You won’t understand.  You won’t see what they’re dealing with.  You may never know what to say.  The important thing is to BE THERE.  The day after I was diagnosed with lupus, 80% of my school friends just stopped talking to me.  That percentage includes the guy I was “talking to” at the time.  People are cruel when they don’t understand things and while walking away may seem to be the easiest way to handle disabled friends it is the most heart-wrenching, cruel, hateful thing to do to someone in such a vulnerable state.  Don’t be that guy!

To those dealing with an invisible disability:

Karen Ravn wrote “Only as high as I reach can I grow/Only as far as I seek can I go/ Only as deep as I look can I see/Only as much as I dream can I be.”

               It’s rough.  It’s not impossible.  Don’t let what you’re dealing with today cloud your perception of yourself.  It isn’t your fault and you should never give up.  If people leave you then they aren’t worth it.  The people who remain and accept you for who you are the best, most love-worthy friends.  People will try to beat you down!  Get used to it and work your butt off.  The best feeling ever is when you accomplish something that you were told was impossible for you! Philippians 4:13 says “I can overcome all things through Christ who strengthens me.”  Go overcome. 

When struggling with hardships, I turn to Psalms 11.  In it, David is describing his emotions in response to his son, Adonijah, having declared himself King and stealing his father’s kingdom from him.  The first part of the psalm shows pain, depression, and deep emotional trauma.  The response at the end of the psalm, however, shows the strength given to those who have faith in God and his meaning for our lives.  I leave it to you to read about how David’s life, while riddled with sin, returned to faith in God and was used to build a foundation for Solomon, Judaism, and eventually Jesus Christ Himself. Anyways… contemplate!

 Psalm 11 English Standard Version (ESV)

The Lord Is in His Holy Temple

To the choirmaster. Of David.

11 In the Lord I take refuge;
how can you say to my soul,
    “Flee like a bird to your mountain,
2 for behold, the wicked bend the bow;
    they have fitted their arrow to the string
    to shoot in the dark at the upright in heart;
3 if the foundations are destroyed,
    what can the righteous do?”[a]

4 The Lord is in his holy temple;
    the Lord's throne is in heaven;
    his eyes see, his eyelids test the children of man.
5 The Lord tests the righteous,
    but his soul hates the wicked and the one who loves violence.
6 Let him rain coals on the wicked;
    fire and sulfur and a scorching wind shall be the portion of their cup.
7 For the Lord is righteous;
he loves righteous deeds;
    the upright shall behold his face.