“Pain is always new to the sufferer, but loses its originality for those around him. ” “Everyone will get used to it except me.” -Alphonse Daudet
I want to be understood in a way I can never be understood. That’s a reality I have to learn to accept with invisible pain. I try to explain until my face turns blue, but my words are often forgotten.
Speaking out lout about pain doesn’t come easy for me. It’s awkward for everyone, and no one knows how to respond. The normal response is pity, and pity is uncomfortable.
Last week it was my boyfriend’s 30th birthday, and I wanted to bake him a cake. We were also invited over to his brother’s house for dinner. These are all things you normally wouldn’t stress about, and people who don’t live with chronic pain don’t have to usually think twice about.
All day I was cautious of everything I did, so I wouldn’t use up all of my energy (spoons) so I wouldn’t be stuck in bed. I did not want to jeopardize making my boyfriend his birthday cake and joining his family for dinner that evening. It’s important that I let go and show the real me. I want to be a part of his family more than anything.
The time came where we were getting ready to leave for his family’s house and I crashed. I ignored the pain for as long as I could until I was tired. I lay in bed until the pain was not as severe, and I could get up and walk with a shuffle.
I was able to make him his birthday cake, and we ended up making it to his family’s house for a nice dinner. Nothing comes without a consequence with illness. I had a difficult time concentrating and talking, and I wondered if anyone noticed. If they did noticed anything at all, it was probably my awkwardness, clumsiness and the periods of time where I became silent. At one point, I was sitting on the bench they have at the dinner table, and I decided to prop my leg up because my right ankle and hip were sharp and throbbing. I was talking with my boyfriend’s sister-in-law, and I moved in some way that my knee shot out of the socket. My whole body froze, and my heart started to pound. I could feel my face starting to turn red and my eyes starting to tear. I quietly shifted my knee and it made a loud crack back into my knee socket. All while going unnoticed and still carrying on a conversation.
I become extremely nervous around others while in pain. I know they can feel the nervousness too. This type of pain is hard to fake, and I have a more difficult time trying to ‘act’ healthy. Trying to cover it up makes me nervous because all I can think about is my joints being stabbed and pulled apart.
Then there’s sensory overload. When you’re experiencing a lot of pain, it’s difficult to socialize because pain makes it almost impossible to think. “The more people in the room the greater the stimulus on your nervous system, and consequently your pain.”
I’m becoming less social these days than I’d like to. It’s difficult to engage with people while hurting all over (it’s all you can think about) and I will then become quiet and end up leaving the room. It’s not that I don’t want to be around anyone because I don’t like their company, but that I’m physically more comfortable in a room that’s quiet.
I have a strong hold on acting healthy and pain-free, it’s a coping method and a way to avoid pity. Acting pain-free one moment, and then not being able sit up right the next, is confusing to others and causes judgment. I don’t always have the words to describe the pain I’m feeling. The severity of the pain ranges from tolerable, and able to carry out some activities, to intolerable where I can’t speak.
It’s not fun to surrender to pain, and when I have to, I like to do so in private, because it usually involves sadness, anger, and sometimes tears. It also involves telling myself that the pain does not define who I am, and I need to be kind and not hard on myself.
Even the strongest are weakened by pain and tests the strongest souls. It’s a constant pull and pain changes people. The loss of abilities that once defined who you were, are powerful and sad. I have to try to regain strength everyday to overcome endless limitations, lack of living, and loss to not let it take over.