I didn’t ask for this and believe me, I don’t want it. I know you roll your eyes, even when you try and hide it. I know you think I’m exaggerating or being dramatic. But this is something I wouldn’t wish on anyone.
You’re used to seeing me work and cook, clean, walk, go shopping and even out with friends. I don’t often complain because if I complained every time I was in pain, I would have nothing else to say. If I’m complaining, just know it must be really severe.
But the truth is, I’m living a double life. I do all these things with a smile on my face because I have no choice. The only other option would be to wallow in bed and watch life pass me by. You see me take my pain meds and wonder if I’m addicted. I take my pain meds and wonder how I will function if they are taken from me. I don’t get high, I get normal. I take those meds to feel as good as you feel when you have a cold. They are the reason I can work, cook and do all the other things you see me doing every day.
The truth is, I’m so sick of the relentless pain that I cry when you’re not looking. I wake up in the night writhing in pain while you’re sleeping. I clench my teeth when you ask me to do something physically daunting while you don’t even give it a second thought. I do 100 things a day that you don’t notice because I hide it. I hide my pain, I hide my fatigue, I hide my guilt and frustration.
The truth is, I watch you and wonder what it’s like to feel like that – to be able to do all these things without pain and fatigue. Sometimes I want to break down and scream and cry. Sometimes I get so angry I want to smash everything around me. Sometimes I wonder if I can keep going like this.
But the part that’s worse than the pain? Knowing you probably don’t believe me. Knowing that no matter how much I try and tell you, you just won’t understand. So, I keep it to myself and even when I’m surrounded by people, I’m still alone with my pain.
I’m not helpless. I don’t want you to feel bad for me. I don’t want special treatment. All I want is some empathy. Don’t get mad at me when I can’t do something. Don’t get frustrated when I can’t go somewhere. Don’t judge me when I take my meds. Don’t think I’m lazy when I sleep more often (especially since I haven’t slept the past four nights). Please just don’t make me feel guilty for having this disease.
Even if you don’t, just say, “I understand.” That’s all I want.