"Looking Sick"

I'm finding it challenging to have to defend how I feel when I don't 'Look Sick'.

What does that mean, looking sick?  Do I need to be breaking out into pink polka dots and zebra stripes? Seriously?

The truth about this disease is that sometimes it simply does not manifest itself in physical signs that can be readily identified.  Sometimes it does.  Do I have the 'butterfly'? Yes, but I've had that for years.  I always chalked that up to a ruddy complexion, so it's considered a normal part of me.  I'm fortunate not to have the discoid blemishes.

I just feel fatigued. I wake up exhausted. I hurt.  My joints ache, I have weird pains in my muscles.  My head hurts.  None of this is particularly new, just worse than it has been in years past.  All of this is hard to quantify.  Without gushing blood, open wounds, projectile vomiting or spiking fevers, there is nothing for someone outside my body to see.

When I'm trying to convey to my aged mother how I'm feeling, it becomes a oneupmanship - who's feeling crappier.  Apparently, I'm taking attention away from her.  She won't acknowledge that I could be having a bad day.  After all I'm functioning.

Well I've been 'functioning' for a long time.  I have to.  Who else is going to pay my bills, take care of my dog and do the things that are necessary.

I have a high tolerance for pain and discomfort.  Because, I've never put myself first. Well all of this changes.  I'm starting to get really angry.  My health, how I'm feeling, this disease is not a competition.  IT'S MY FREAKING REALITY!!!!!!

How dare it be minimize it because of fear.  I respect her fear, but I can't condone her diminishment of what I'm going through because she can't deal with is.  I am not looking for sympathy.  Frankly, I'm not looking for special circumstances.  I just want to be able to refuse an invitation or say 'I'm not up to going out today.' without getting a guilt trip.  Or without the most condescending of phrases, 'You don't look sick.'

I'm even angry at myself for allowing myself to play second fiddle.  I'm important.  My needs have to come first.  This is not being 'selfish', this is about me being healthy.