I was talking with a friend tonight when she said "it's sounds like you are feeling better!" I was stunned, I seriously made a face to my phone that said are you freaking serious? Then I asked her what I had said that makes her think that.
I know that those of us with invisible illnesses get this a lot, "but you don't sound sick" "but you don't look sick" and it's maddening. I'm glad you are relieved that I am doing better based on the sound of my voice, or the posts I post on Facebook, but there is so much that you don't see- hence invisible illness!
You did it see my body convulse with muscle spasms for the first hour of laying down last night!
You didn't hear me cry out in pain, pain that rips me from sleep.
You don't see me fall to the floor because the pain of a misplaced knee bone caught me off guard.
You didn't watch my breath get sucked away simply because I tried to turn over finding a comfortable place to sleep only to be ripped awake again because my Cortisol has gone low and I hurry as best as this body will let me hurry, praying I make it to the toilet before explosive diarrhea or projectile vomiting releases the gut wrenching cramps from my stomach.
As I sit there on the grand thrown my hair gets drenched in sweat, towels of moisture beading from cold skin, my body involuntarily curls and disfigured due to more pain in my stomach.
You don't see this.
I finally stumble back to bed for a bit more sleep.
When morning comes I wake with the worst hangover headache you could imagine, my face is swollen and my eyes are sunken and red! You don't see how I shake, mellow tremors, or how I stumble like a pin ball down the hall.
You don't see the extent of my memory issues, my loss of words and slurred speech are funny to you- you only see a portion, minutes at a time- you don't see the other minutes/hours/days/weeks/years that I struggle for cognitive clarity and intelligence.
You don't see me forget to take this medication or that one and the price I pay for it; rather it's lightning bolts of pain in my head or my stomach on fire, you don't see that.
You don't see me struggle to eat something with those meds when I know anything I eat will make me sick.
You don't see me try to stand in the kitchen for a load of dishes, hunched and knees giving way to the excruciating pain spasms.
You don't see the struggle to stay awake just ten more minutes, you don't see the 3-4hour nap I need. You don't see the depressive insomnia, the nights I doubt my worth for living.
You don't see how a walk to restroom will raise my heart rate and make me nauseous and dizzy.
You don't see me sink to the shower floor or crawl out simply because my body would no longer hold me up.
You don't see how it takes me almost an hour or more to recover from that shower.
You don't see the exhaustion that applying makeup causes!
You don't smell the days I cannot even muster the energy for a shower- again.
I am not telling you this to make you feel sorry for me, I am telling you this because it gets really old that people don't think I am that sick! They think I could do more. I don't know what they think I do or how much they think I should do, but you can bet if I had a casted leg, stitches in my stomach, or loss of hair from chemo they would never expect these things, they would see my ailment and have compassions, patience, love, and understanding.
But mine cannot be seen so it is insignificant.
I push myself harder than you could ever push me, your comments indicating I am okay or okay "enough," hurt- they cut like a knife, because I assure that I am already pushing just to do what I do.
Some days I wish you could feel what I feel, not so you will suffer but so you will understand, so you will be more compassionate and less judgmental.
I'll end this post, this rant, because I know those that most need to know this, will not read it anyway. But it did feel good to rant it out!!!
Ps- tonight you don't see the 7month pregnant looking swollen belly I am resting my hands and phone on…