The Monster Under the Bed
How many times did we cry for our parents at night, convinced there was a monster under the bed? At first, did our parents check underneath the springs, calmly telling us there was nothing to fear? How about the third, fourth or tenth time? Did they just go to the door and say, “just close your eyes and go to bed”? Did our parents believe us or did they think we were crying wolf because we didn’t want to go to sleep? It doesn’t matter whether we believed there was a gooey, three-eyed monster hiding underneath, our parents didn’t.
Let’s fast forward to adulthood…
When was the first time you bailed on plans with friends or family? What did they say? Did they say it was okay and that they hoped you felt better soon? What did they say the third, fourth or tenth time? Did they think you were convinced there was a monster under the bed when they couldn’t see anything?
My monster is RA
My monster under the bed is RA and I believe, no sorry, I know it exists even when other people can’t see it. My friends support me when I can’t go out or cancel plans at the last minute but as time goes on I get fewer and fewer invites.
There is a lot of baggage that comes with an invisible illness. Invisible baggage, of course, because why make things a little easier for those with chronic illnesses, right? We have pretty smooth sailing as it is so, of course, the universe throws us even more silent troubles.
Our bodies are on the rampage, apparently too dumb to do their actual jobs. Our immune systems are especially dense, sitting there and attacking perfectly healthy tissue. This all causes pain, inflammation, and destruction that nobody else can see until it’s too late.
But, it’s there when no one else can see it. The monster lurks in the darkest crevices under the bed. We tell people it exists and explain our fear: the fear that we might collapse during an outing with friends, the fear that staying out in the sun will drain our energy supplies for the next few days, the fear that if we move in one direction for too long we might do extra damage to our bodies. We explain it but people just don’t believe what they can’t see.
Sometimes a lone person or group understands, no, accepts we have inner turmoil and doesn’t let it affect their opinion of us. They offer help without asking or judging. They check in occasionally to make sure we’re okay.
Other than these few gems, RA is a very isolating disease because there are fewer visible signs compared to invisible ones.
Most people know I have Rheumatoid Arthritis at this point but other than actually telling them about the pain I’m feeling they won’t know what I’m feeling. I smile, I laugh, I make self-deprecating jokes and I play along with the more physically extensive activities.
I always prided myself on being strong, both physically and mentally, so it’s hard to show people my disability but, maybe I need to. Maybe I shouldn’t hide my limp or funny walk, maybe I need to use my cane more often, wince or say ‘ow’ when I feel pain, not smile through it all and ask for more help. How can I expect people to believe there is a monster under the bed unless I show them?
Do you have a support system? Let me know in the comments!
How often you do experience an unexpected boost of energy?