This is how I feel when my pain is so bad I verbally and physically let it all out and I get weird and judgemental stares back.
Imagine running an errand and the pain hits and you scream out.
Imagine watching a quite movie at home and the pain hits and you scream out.
Imagine going to a funeral and the pain hits and you jolt in pain and try to hold back from screaming out and everyone in the pew looks at you.
Imagine being in a car and the pain hits and your confined to this one position and you’re trying to move and adjust and want to scream out but that would distract the driver.
These disruptive moments suck. I hate that feeling of needing to hold it all in just to not “disrupt” anyone else. I hate needing to let it out and it’s so “disruptive” people think you’re crazy or run to you as if you truly are dying.
The other day I was sitting on my couch, my brother was visiting and we were watching TV. I had two separate pain moments. The first we were just sitting there. I had an immediate shock in my left eye, left temple and left side of my brain. I jolted and grabbed my face and eye. I’m holding back, only grunting and moaning, trying to concentrate on my breathing and not yelling out. I did this to not disrupt my brother. Little did I know he was already watching me, quietly and asked “you okay?” And I immediately realize why the eff am I holding back. He clearly noticed and was clearly concerned. He stayed quite and let me continue there in pain because what else is there to do.
The second time he got up and was attaching his game console to my tv. As he’s up he’s talking to me and I to him. My legs immediately felt like they were being shocked and had my usual nerve pain. I start kicking and grabbing my legs. Again trying to hold back from screaming and crying. I’m rocking back and forth and groaning. My eyes are closed and again, he’s just standing there looking at me with such sad eyes. He didn’t know what to do. He didn’t know how to help me. He asked “you okay again?” I say yes lying because the pain is absolutely not okay and in those moments I’m not okay. We both sit there.
These moments are so “disruptive” to my daily life. Not even just that but to others. 😭 My ailments don’t just effect me..they effect those around me too. Imagine living life in so much pain but never truly being able to express it.
I have to hold back not only to protect my loved ones from worrying (which effin sucks) but I hold back as to not interrupt and disrupt strangers lives as well (so stupid.) Being chronically ill and disabled isn’t fun, it’s not something someone can just walk around and scream “I’m disabled and ill” proudly because society has groomed us to believe that we are not to voice or express pain, hardship and ailments. This is wrong and so very sad for those like me. We can’t even be us because our ailments won’t let us but then we can’t even be ill because society won’t let us. It’s very disruptive being Chroncially Ill.